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2. Evidence-Based Selection, Development, and Testing of a Tailored Strategy to Improve Standardized Structured Reporting in Pathology: A Multicenter Study

Author

Swillens, Julie E.M., Voorham, Quirinus J.M., Nagtegaal, Iris D., and Hermens, Rosella P.M.G.

Subjects
Self-efficacy (Psychology) -- Evaluation, Accuracy and precision -- Health aspects, Registries (in medicine) -- Analysis, Oncology -- Methods, Health
Abstract

* Context.--Standardized structured reporting (SSR) among pathologists results in more complete diagnoses and, subsequently, improved treatment decisions and patient outcomes. Therefore, SSR templates' usage is advocated in oncology guidelines. However, actual SSR usage varies widely. Previous studies have shown multiple impeding and facilitating factors regarding SSR implementation. Objective.--To select, develop, and test an evidence-based multifaceted strategy, tailored to the impeding and facilitating factors to improve SSR implementation in oncologic pathology. Design.--Six strategy elements to increase the use of SSR were selected on the basis of a barrier and facilitator analysis, literature review, and consecutive discussions with a nationwide expert panel and project team. In collaboration with a professional organization for developing SSR templates (PALGA), we developed elements and combined them in 1 multifaceted strategy and subsequently tested effectiveness and feasibility. Results.--The 6 strategy elements were as follows: (1) renewed Web site including SSR information; (2) e-learning including SSR instructions; (3) communication manual describing communication about SSR; (4) improved feedback process, including use of the 'Feedback Button' within SSR templates and 'Frequently Asked Questions' on the Web site; (5) information sheet on SSR updates within SSR templates; and (6) monthly telephone conversations to discuss audit and feedback information regarding local SSR usage. A significant change (12.4%) in SSR usage among test laboratories was noticed. After the first test, e-learning and the 'Feedback Button' were deemed most feasible and effective. However, awareness of all elements could be increased. Conclusions.--Next steps will be to optimize the tailored strategy, to distribute it to all Dutch pathology laboratories, and to evaluate effectiveness and feasibility in a nationwide setting., Improved completeness and accuracy of diagnostic oncologic reports are of substantial importance, since these reports form the basis of multidisciplinary oncology care. (1,2) Standardized structured reporting (SSR), instead of narrative [...]

Published
2022
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4. Value of routine follow-up for recurrence detection after treatment with curative intent for laryngeal squamous cell carcinoma

Author

van de Weerd, Cecile, primary, Geurts, Sandra M.E., additional, Vercoulen, Richard J.M.T., additional, van Veggel, Inge H.F., additional, Brands, Maria T., additional, Marres, Henri A.M., additional, Hermens, Rosella P.M.G., additional, van Tol-Geerdink, Julia J., additional, Kaanders, Johannes H.A.M., additional, and Takes, Robert P., additional

Published
2023
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6. Major obstetric hemorrhage: Patients’ perspective on the quality of care

Author

de Visser, Suzan M., Kirchner, Christian A., van der Velden, Bianca G.J., de Wit, Alexander C., Dijkman, Anneke, Huisjes, Anjoke J.M., Middeldorp, Johanna M., Moonen-Delarue, Desirée, van Dillen, Jeroen, Vandenbussche, Frank P.H.A., Hulscher, Marlies E., Scheepers, Hubertina C.J., Woiski, Mallory D., and Hermens, Rosella P.M.G.

Published
2018
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8. Perceived barriers and facilitators to health behaviors in European childhood cancer survivors:A qualitative PanCareFollowUp study

Author

Bouwman, Eline, Pluijm, Saskia M.F., Stollman, Iridi, Araujo-Soares, Vera, Blijlevens, Nicole M.A., Follin, Cecilia, Winther, Jeanette F., Hjorth, Lars, Kepak, Tomas, Kepakova, Katerina, Kremer, Leontien C.M., Muraca, Monica, van der Pal, Helena J.H., Schneider, Carina, Uyttebroeck, Anne, Vercruysse, Gertrui, Skinner, Rod, Brown, Morven C., Hermens, Rosella P.M.G., and Loonen, Jacqueline J.

Subjects
cancer risk factors, cancer prevention, Cancer Survivors, Health Behavior, Humans, behavioral science, Focus Groups, Child, survival, Neoplasms/epidemiology, Qualitative Research, pediatric cancer
Abstract

Background: Healthy behaviors, that is, engaging in regular physical activities, maintaining a healthy diet, limiting alcohol consumption, and avoiding tobacco and drug use, decrease the risk of developing late adverse health conditions in childhood cancer survivors. However, childhood cancer survivors may experience barriers to adopting and maintaining healthy behaviors. This study aimed to assess these barriers and facilitators to health behavior adoption and maintenance in childhood cancer survivors. Methods: A focus group (n = 12) and semi-structured telephone interviews (n = 20) were conducted with a selected sample of European and Dutch childhood cancer survivors, respectively. The Theoretical Domains Framework (TDF) was used to inform the topic guide and analysis. Inductive thematic analysis was applied to identify categories relating to barriers and facilitators of health behavior adoption and maintenance, after which they were deductively mapped onto the TDF. Results: Ten TDF domains were identified in the data of which “Knowledge,” “Beliefs about consequences,” “Environmental context and resources,” and “Social influences” were most commonly reported. Childhood cancer survivors expressed a need for knowledge on the importance of healthy behaviors, possibly provided by healthcare professionals. They indicated physical and long-term benefits of healthy behaviors, available professional support, and a supporting and health-consciously minded work and social environment to be facilitators. Barriers were mostly related to a lack of available time and an unhealthy environment. Lastly, (social) media was perceived as both a barrier and a facilitator to healthy behaviors. Conclusion: This study has identified education and available professional support in health behaviors and the relevance of healthy behaviors for childhood cancer survivors as key opportunities for stimulating health behavior adoption in childhood cancer survivors. Incorporating health behavior support and interventions for this population should therefore be a high priority.

Published
2023

13. Therapeutic drug monitoring to personalize dosing of imatinib, sunitinib, and pazopanib:A mixed methods study on barriers and facilitators

Author

Westerdijk, Kim, Steeghs, Neeltje, Tacke, Casper S.J., van der Graaf, Winette T.A., van Erp, Nielka P., van Oortmerssen, Gerard, Hermens, Rosella P.M.G., Desar, Ingrid M.E., Westerdijk, Kim, Steeghs, Neeltje, Tacke, Casper S.J., van der Graaf, Winette T.A., van Erp, Nielka P., van Oortmerssen, Gerard, Hermens, Rosella P.M.G., and Desar, Ingrid M.E.

Abstract

Background:Personalized dosing based on measurement of individual drug levels and adjusting the dose accordingly can improve efficacy and decrease unnecessary toxicity of oncological treatment. For imatinib, sunitinib, and pazopanib, this therapeutic drug monitoring (TDM)-guided dosing is, however, not routinely used, despite accumulating evidence favoring individualized dosing. Therefore, we aimed to identify and quantify (potential) barriers and facilitators in TDM-guided dosing for imatinib, sunitinib, and pazopanib. Methods: We performed a mixed methods study among all stakeholders involved: patients, healthcare professionals (HCPs), pharmaceutical companies, and health insurance companies. During the first qualitative part of this study, we performed semi-structured individual interviews and one focus group interview to identify all (potential) barriers and facilitators, and during the second quantitative part of this study, we used a web-based survey to quantify these findings. The interviews addressed the six domains of the implementation of change model of Grol and Wensing: (1) the innovation itself; (2) the HCP; (3) the patient; (4) social context; (5) organizational context; and (6) finances, law, and governance. Results: In the qualitative study, we interviewed 20 patients, 18 HCPs and 10 representatives of pharmaceutical and health insurance companies and identified 72 barriers and 90 facilitators. In the quantitative study, the survey was responded by 66 HCPs and 58 patients. Important barriers were on the domain of the HCP, such as a lack of experience with TDM (36.4%), on the domain of the patient, such as lack of awareness of TDM (39.7%), and the processing time for measurement and interpretation of the TDM result (40.9%) (organizational domain). Important facilitators were education of HCPs (95.5%), education of patients (87.9%) and facilitating an overview of when and where TDM measurements

Published
2023

14. Adherence to quality indicators in chronic myeloid leukemia care:results from a population-based study in The Netherlands

Author

Ector, Geneviève I.C.G., Geelen, Inge G.P., Dinmohamed, Avinash G., Hoogendoorn, Mels, Westerweel, Peter E., Hermens, Rosella P.M.G., Blijlevens, Nicole M.A., Ector, Geneviève I.C.G., Geelen, Inge G.P., Dinmohamed, Avinash G., Hoogendoorn, Mels, Westerweel, Peter E., Hermens, Rosella P.M.G., and Blijlevens, Nicole M.A.

Abstract

Suboptimal guideline adherence in chronic myeloid leukemia (CML) care is associated with worse treatment outcomes. Current study focused on adherence to seven quality indicators (QIs) based on the European Leukemia Network guideline (one diagnostic, one therapeutic, and five monitoring indicators). Data were obtained from population-based registries in the Netherlands of 405 newly diagnosed chronic phase CML patients between January 2008 and April 2013. Compliance rates regarding diagnostic and therapeutic indicator were 83% and 78%, respectively. Monitoring indicators rates were lower: 21–27% for indicators concerning the first year and 58% and 62% for the second and third year, respectively. Noncompliance occurred mostly due to non-timely monitoring. Twenty cases did not comply with any indicator, 6% complied with all indicators. After adjustment for age, overall survival rates did not differ significantly between the groups. Adherence to guideline-based QIs was suboptimal. This demonstrates the evidence-practice gap, shows room for improvement and underscores the need for real-world data.

Published
2023

18. Reply to J. Zhang et al

Author

Steenbeek, Miranda P., primary, van Bommel, Majke H.D., additional, Bulten, Johan, additional, Hermens, Rosella P.M.G., additional, IntHout, Joanna, additional, and de Hullu, Joanne A., additional

Published
2022
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19. Risk of Peritoneal Carcinomatosis After Risk-Reducing Salpingo-Oophorectomy: A Systematic Review and Individual Patient Data Meta-Analysis

Author

Steenbeek, Miranda P., primary, van Bommel, Majke H.D., additional, Bulten, Johan, additional, Hulsmann, Julia A., additional, Bogaerts, Joep, additional, Garcia, Christine, additional, Cun, Han T., additional, Lu, Karen H., additional, van Beekhuizen, Heleen J., additional, Minig, Lucas, additional, Gaarenstroom, Katja N., additional, Nobbenhuis, Marielle, additional, Krajc, Mateja, additional, Rudaitis, Vilius, additional, Norquist, Barbara M., additional, Swisher, Elizabeth M., additional, Mourits, Marian J.E., additional, Massuger, Leon F.A.G., additional, Hoogerbrugge, Nicoline, additional, Hermens, Rosella P.M.G., additional, IntHout, Joanna, additional, and de Hullu, Joanne A., additional

Published
2022
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20. Cancer worry among BRCA1/2 pathogenic variant carriers choosing surgery to prevent tubal/ovarian cancer:course over time and associated factors

Author

van Bommel, Majke H.D., Steenbeek, Miranda P., IntHout, Joanna, Hermens, Rosella P.M.G., Hoogerbrugge, Nicoline, Harmsen, Marline G., van Doorn, Helena C., Mourits, Marian J.E., van Beurden, Marc, Zweemer, Ronald P., Gaarenstroom, Katja N., Slangen, Brigitte F.M., Brood-van Zanten, Monique M.A., Vos, M. Caroline, Piek, Jurgen M., van Lonkhuijzen, Luc R.C.W., Apperloo, Mirjam J.A., Coppus, Sjors F.P.J., Prins, Judith B., Custers, José A.E., de Hullu, Joanne A., van Bommel, Majke H.D., Steenbeek, Miranda P., IntHout, Joanna, Hermens, Rosella P.M.G., Hoogerbrugge, Nicoline, Harmsen, Marline G., van Doorn, Helena C., Mourits, Marian J.E., van Beurden, Marc, Zweemer, Ronald P., Gaarenstroom, Katja N., Slangen, Brigitte F.M., Brood-van Zanten, Monique M.A., Vos, M. Caroline, Piek, Jurgen M., van Lonkhuijzen, Luc R.C.W., Apperloo, Mirjam J.A., Coppus, Sjors F.P.J., Prins, Judith B., Custers, José A.E., and de Hullu, Joanne A.

Abstract

Objective: High cancer risks, as applicable to BRCA1 and BRCA2 pathogenic variant (PV) carriers, can induce significant cancer concerns. We examined the degree of cancer worry and the course of this worry among BRCA1/2-PV carriers undergoing surgery to prevent ovarian cancer, and identified factors associated with high cancer worry. Methods: Cancer worry was evaluated as part of the multicentre, prospective TUBA-study (NCT02321228) in which BRCA1/2-PV carriers choose either novel risk-reducing salpingectomy with delayed oophorectomy or standard risk-reducing salpingo-oophorectomy. The Cancer Worry Scale was obtained before and 3 and 12 months after surgery. Cancer worry patterns were analysed using latent class growth analysis and associated factors were identified with regression analysis. Results: Of all 577 BRCA1/2-PV carriers, 320 (57%) had high (≥ 14) cancer worry pre-surgery, and 54% had lower worry 12 months post-surgery than pre-surgery. Based on patterns over time, BRCA1/2-PV carriers could be classified into three groups: persistently low cancer worry (56%), persistently high cancer worry (6%), and fluctuating, mostly declining, cancer worry (37%). Factors associated with persistently high cancer concerns were age below 35 (BRCA1) or 40 (BRCA2), unemployment, previous breast cancer, lower education and a more recent BRCA1/2-PV diagnosis. Conclusions: Some degree of cancer worry is considered normal, and most BRCA1/2-PV carriers have declining cancer worry after gynaecological risk-reducing surgery. However, a subset of these BRCA1/2-PV carriers has persisting major cancer concerns up to 1 year after surgery. They should be identified and potentially offered additional support. Clinical trial registration: The TUBA-study is registered at ClinicalTrials.gov since December 11th, 2014. Registration number: NCT02321228.

Published
2022

21. STop OVarian CAncer (STOPOVCA) young: Protocol for a multicenter follow-up study to determine the long-term effects of opportunistic salpingectomy on age at menopause

Author

Gelderblom, Malou E., primary, IntHout, Joanna, additional, Hermens, Rosella P.M.G, additional, Coppus, Sjors F.P.J., additional, Ebisch, Inge, additional, van Ginkel, Alexandra A., additional, van de Laar, Rafli, additional, de Lange, Natascha, additional, Maassen, Marloes, additional, Pijlman, Brenda, additional, Smedts, Huberdina P.M., additional, Vos, M. Caroline, additional, Beerendonk, Catharina C.M., additional, de Hullu, Joanne A., additional, and Piek, Jurgen M.J., additional

Published
2022
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24. The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer

Author

van Kalsbeek, Rebecca J., primary, Mulder, Renée L., additional, Haupt, Riccardo, additional, Muraca, Monica, additional, Hjorth, Lars, additional, Follin, Cecilia, additional, Kepak, Tomas, additional, Kepakova, Katerina, additional, Uyttebroeck, Anne, additional, Mangelschots, Marlies, additional, Falck Winther, Jeanette, additional, Loonen, Jacqueline J., additional, Michel, Gisela, additional, Bardi, Edit, additional, Elmerdahl Frederiksen, Line, additional, den Hartogh, Jaap, additional, Mader, Luzius, additional, Roser, Katharina, additional, Schneider, Carina, additional, Brown, Morven C., additional, Brunhofer, Melanie, additional, Göttgens, Irene, additional, Hermens, Rosella P.M.G., additional, Kienesberger, Anita, additional, Korevaar, Joke C., additional, Skinner, Roderick, additional, van der Pal, Helena J.H., additional, and Kremer, Leontine C.M., additional

Published
2022
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25. Adherence to quality indicators in chronic myeloid leukemia care: results from a population-based study in The Netherlands.

Author

Ector, Geneviève I.C.G., Geelen, Inge G. P., Dinmohamed, Avinash G., Hoogendoorn, Mels, Westerweel, Peter E., Hermens, Rosella P.M.G., and Blijlevens, Nicole M.A.

Subjects
CHRONIC myeloid leukemia, CHRONIC leukemia, SHOWROOMS, OVERALL survival, SURVIVAL rate, LEUKEMIA
Abstract

Suboptimal guideline adherence in chronic myeloid leukemia (CML) care is associated with worse treatment outcomes. Current study focused on adherence to seven quality indicators (QIs) based on the European Leukemia Network guideline (one diagnostic, one therapeutic, and five monitoring indicators). Data were obtained from population-based registries in the Netherlands of 405 newly diagnosed chronic phase CML patients between January 2008 and April 2013. Compliance rates regarding diagnostic and therapeutic indicator were 83% and 78%, respectively. Monitoring indicators rates were lower: 21–27% for indicators concerning the first year and 58% and 62% for the second and third year, respectively. Noncompliance occurred mostly due to non-timely monitoring. Twenty cases did not comply with any indicator, 6% complied with all indicators. After adjustment for age, overall survival rates did not differ significantly between the groups. Adherence to guideline-based QIs was suboptimal. This demonstrates the evidence-practice gap, shows room for improvement and underscores the need for real-world data. [ABSTRACT FROM AUTHOR]

Published
2023
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29. Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy

Author

Steenbeek, Miranda P., primary, van Bommel, Majke H.D., additional, Harmsen, Marline G., additional, Hoogerbrugge, Nicoline, additional, van Doorn, Helena C., additional, Keurentjes, José H.M., additional, van Beurden, Marc, additional, Zweemer, Ronald P., additional, Gaarenstroom, Katja N., additional, Penders, Charlotte G.J., additional, Brood-van Zanten, Monique M.A., additional, Vos, M. Caroline, additional, Piek, Jurgen M., additional, van Lonkhuijzen, Luc R.C.W., additional, Apperloo, Mirjam J.A., additional, Coppus, Sjors F.P.J., additional, IntHout, Joanna, additional, de Hullu, Joanne A., additional, and Hermens, Rosella P.M.G., additional

Published
2021
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30. The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers

Author

van Kalsbeek, Rebecca J., primary, van der Pal, Helena J.H., additional, Hjorth, Lars, additional, Winther, Jeanette F., additional, Michel, Gisela, additional, Haupt, Riccardo, additional, Uyttebroeck, Anne, additional, O'Brien, Kylie, additional, Kepakova, Katerina, additional, Follin, Cecilia, additional, Muraca, Monica, additional, Kepak, Tomas, additional, Araujo-Soares, Vera, additional, Bardi, Edit, additional, Blondeel, Anne, additional, Bouwman, Eline, additional, Brown, Morven C., additional, Frederiksen, Line E., additional, Essiaf, Samira, additional, Hermens, Rosella P.M.G., additional, Kienesberger, Anita, additional, Korevaar, Joke C., additional, Mader, Luzius, additional, Mangelschots, Marlies, additional, Mulder, Renée L., additional, van den Oever, Selina, additional, Rijken, Mieke, additional, Roser, Katharina, additional, Skinner, Rod, additional, Pluijm, Saskia M.F., additional, Loonen, Jacqueline J., additional, Kremer, Leontien C.M., additional, Van der Pal, Helena J.H., additional, van Kalsbeek, Rebecca J., additional, Van den Oever, Selina R., additional, Eriksson, Lill, additional, Relander, Thomas, additional, Engellau, Jacob, additional, Fjordén, Karin, additional, Bogefors, Karolina, additional, Holmqvist, Anna Säll fors, additional, Nicolas, Brigitte, additional, Bagnasco, Francesca, additional, Benvenuto, Marina, additional, Aulicino, Anna, additional, Laudisi, Luca, additional, Hrstkova, Hana, additional, Bajciova, Viera, additional, Holikova, Marta, additional, Strublova, Lucie, additional, Renard, Marleen, additional, Jacobs, Sandra, additional, Segers, Heidi, additional, Van Helvoirt, Monique, additional, Winther, Jeanette Falck, additional, Frederiksen, Line Elmerdahl, additional, Andersen, Elisabeth Anne Wreford, additional, Boes, Stefan, additional, Loonen, Jacqueline, additional, Hermens, Rosella, additional, Göttgens, Irene, additional, Stollman, Iridi, additional, Penson, Adriaan, additional, Skinner, Roderick, additional, Sciberras, William, additional, Korevaar, Joke, additional, Den Hartogh, Jaap, additional, Gsell, Hannah, additional, Schneider, Carina, additional, Hartogh, Jaap den, additional, and Te Dorsthorst, Jeroen, additional

Published
2021
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31. The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers

Author

van Kalsbeek, Rebecca J., van der Pal, Helena J.H., Hjorthc, Lars, Falck Winther, Jeanette, Michel, Gisela, Haupt, Riccardo, Uyttebroeck, Anne, O'Brien, Kylie, Kepakova, Katerina, Follin, Cecilia, Muraca, Monica, Kepakj, Tomas, Araujo-Soares, Vera, Bardi, Edit, Blondeel, Anne, Bouwman, Eline, Brown, Morven C., Elmerdahl Frederiksend, Line, Essiaf, Samira, Hermens, Rosella P.M.G., Kienesberger, Anita, Korevaar, Joke C., Roser, Katharina, Skinner, Rod, Pluijma, Saskia M.F., Loonen, Jacqueline J., and Kremer, Leontien C.M.

Subjects
humanities
Abstract

Background The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. Methods The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline–based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. Results Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years. Conclusions The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions.

Published
2021
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32. Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy

Author

Steenbeek, Miranda P., van Bommel, Majke H.D., Harmsen, Marline G., Hoogerbrugge, Nicoline, van Doorn, Helena C., Keurentjes, José H.M., van Beurden, Marc, Zweemer, Ronald P., Gaarenstroom, Katja N., Penders, Charlotte G.J., Brood-van Zanten, Monique M.A., Vos, M. Caroline, Piek, Jurgen M., van Lonkhuijzen, Luc R.C.W., Apperloo, Mirjam J.A., Coppus, Sjors F.P.J., IntHout, Joanna, de Hullu, Joanne A., Hermens, Rosella P.M.G., Steenbeek, Miranda P., van Bommel, Majke H.D., Harmsen, Marline G., Hoogerbrugge, Nicoline, van Doorn, Helena C., Keurentjes, José H.M., van Beurden, Marc, Zweemer, Ronald P., Gaarenstroom, Katja N., Penders, Charlotte G.J., Brood-van Zanten, Monique M.A., Vos, M. Caroline, Piek, Jurgen M., van Lonkhuijzen, Luc R.C.W., Apperloo, Mirjam J.A., Coppus, Sjors F.P.J., IntHout, Joanna, de Hullu, Joanne A., and Hermens, Rosella P.M.G.

Abstract

Objective: Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice. Methods: Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA-study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision). Results: 283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would recommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and cancer worry were similar in both cohorts. Conclusions: The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly appreciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy.

Published
2021

33. Association of Salpingectomy with Delayed Oophorectomy Versus Salpingo-oophorectomy with Quality of Life in BRCA1/2 Pathogenic Variant Carriers:A Nonrandomized Controlled Trial

Author

Steenbeek, Miranda P., Harmsen, Marline G., Hoogerbrugge, Nicoline, De Jong, Marieke Arts, Maas, Angela H.E.M., Prins, Judith B., Bulten, Johan, Teerenstra, Steven, Van Bommel, Majke H.D., Van Doorn, Helena C., Mourits, Marian J.E., Van Beurden, Marc, Zweemer, Ronald P., Gaarenstroom, Katja N., Slangen, Brigitte F.M., Brood-Van Zanten, Monique M.A., Vos, M. Caroline, Piek, Jurgen M.J., Van Lonkhuijzen, Luc R.C.W., Apperloo, Mirjam J.A., Coppus, Sjors F.P.J., Massuger, Leon F.A.G., Inthout, Joanna, Hermens, Rosella P.M.G., De Hullu, Joanne A., Steenbeek, Miranda P., Harmsen, Marline G., Hoogerbrugge, Nicoline, De Jong, Marieke Arts, Maas, Angela H.E.M., Prins, Judith B., Bulten, Johan, Teerenstra, Steven, Van Bommel, Majke H.D., Van Doorn, Helena C., Mourits, Marian J.E., Van Beurden, Marc, Zweemer, Ronald P., Gaarenstroom, Katja N., Slangen, Brigitte F.M., Brood-Van Zanten, Monique M.A., Vos, M. Caroline, Piek, Jurgen M.J., Van Lonkhuijzen, Luc R.C.W., Apperloo, Mirjam J.A., Coppus, Sjors F.P.J., Massuger, Leon F.A.G., Inthout, Joanna, Hermens, Rosella P.M.G., and De Hullu, Joanne A.

Abstract

Importance: Most women with a BRCA1/2 pathogenic variant undergo premature menopause with potential short- and long-term morbidity due to the current method of ovarian carcinoma prevention: risk-reducing salpingo-oophorectomy (RRSO). Because the fallopian tubes play a key role in ovarian cancer pathogenesis, salpingectomy with delayed oophorectomy may be a novel risk-reducing strategy with benefits of delaying menopause. Objective: To compare menopause-related quality of life after risk-reducing salpingectomy (RRS) with delayed oophorectomy with RRSO in carriers of the BRCA1/2 pathogenic variant. Design, Setting, and Participants: A multicenter nonrandomized controlled preference trial (TUBA study), with patient recruitment between January 16, 2015, and November 7, 2019, and follow-up at 3 and 12 months after surgery was conducted in all Dutch university hospitals and a few large general hospitals. In the Netherlands, RRSO is predominantly performed in these hospitals. Patients at the clinical genetics or gynecology department between the ages of 25 and 40 years (BRCA1) or 25 to 45 years (BRCA2) who were premenopausal, had completed childbearing, and were undergoing no current treatment for cancer were eligible. Interventions: Risk-reducing salpingo-oophorectomy at currently recommended age or RRS after completed childbearing with delayed oophorectomy. After RRSO was performed, hormone replacement therapy was recommended for women without contraindications. Main Outcomes and Measures: Menopause-related quality of life as assessed by the Greene Climacteric Scale, with a higher scale sum (range, 0-63) representing more climacteric symptoms. Secondary outcomes were health-related quality of life, sexual functioning and distress, cancer worry, decisional regret, and surgical outcomes. Results: A total of 577 women (mean [SD] age, 37.2 [3.5] years) were enrolled: 297 (51.5%) were pathogenic BRCA1 variant carriers and 280 (48.5%) were BRCA2 pathogenic variant carriers.

Published
2021

35. European Healthcare Professionals’ Perceived Barriers and Facilitators to Provision of Health Behavior Support for Childhood Cancer Survivors: A Qualitative PanCareFollowUp Study

Author

Bouwman, Eline, primary, Pluijm, Saskia M.F., additional, Stollman, Iridi, additional, Araujo-Soares, Vera, additional, Blijlevens, Nicole M.A., additional, Follin, Cecilia, additional, Winther, Jeanette Falck, additional, Hjorth, Lars, additional, Kepak, Tomas, additional, Kepakova, Katerina, additional, Kremer, Leontien C.M., additional, Muraca, Monica, additional, van der Pal, Helena J.H., additional, Schneider, Carina, additional, Uyttebroeck, Anne, additional, Skinner, Rod, additional, Vercruysse, Gertrui, additional, Brown, Morven C., additional, Hermens, Rosella P.M.G., additional, and Loonen, Jacqueline J., additional

Published
2021
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45. Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity

Author

Geurtzen, Rosa, Van Heijst, Arno F.J., Draaisma, Jos M.T., Kuijpers, Lindie J.M.K., Woiski, Mallory, Scheepers, Hubertina C.J., Van Kaam, Anton H., Oudijk, Martijn A., Lafeber, Harrie N., Bax, Caroline J., Koper, Jan F., Duin, Leonie K., Van der Hoeven, Marc A., Kornelisse, René F., Duvekot, Johannes J., Andriessen, Peter, Van Runnard Heimel, Pieter J., Van der Heide-Jalving, Marja, Bekker, Mireille N., Mulder-De Tollenaer, Susanne M., Van Eyck, Jim, Eshuis-Peters, Ellis, Graatsma, Margo, Hermens, Rosella P.M.G., Hogeveen, Marije, Geurtzen, Rosa, Van Heijst, Arno F.J., Draaisma, Jos M.T., Kuijpers, Lindie J.M.K., Woiski, Mallory, Scheepers, Hubertina C.J., Van Kaam, Anton H., Oudijk, Martijn A., Lafeber, Harrie N., Bax, Caroline J., Koper, Jan F., Duin, Leonie K., Van der Hoeven, Marc A., Kornelisse, René F., Duvekot, Johannes J., Andriessen, Peter, Van Runnard Heimel, Pieter J., Van der Heide-Jalving, Marja, Bekker, Mireille N., Mulder-De Tollenaer, Susanne M., Van Eyck, Jim, Eshuis-Peters, Ellis, Graatsma, Margo, Hermens, Rosella P.M.G., and Hogeveen, Marije

Published
2019

46. Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity

Author

MS Verloskunde, Child Health, Geurtzen, Rosa, Van Heijst, Arno F.J., Draaisma, Jos M.T., Kuijpers, Lindie J.M.K., Woiski, Mallory, Scheepers, Hubertina C.J., Van Kaam, Anton H., Oudijk, Martijn A., Lafeber, Harrie N., Bax, Caroline J., Koper, Jan F., Duin, Leonie K., Van der Hoeven, Marc A., Kornelisse, René F., Duvekot, Johannes J., Andriessen, Peter, Van Runnard Heimel, Pieter J., Van der Heide-Jalving, Marja, Bekker, Mireille N., Mulder-De Tollenaer, Susanne M., Van Eyck, Jim, Eshuis-Peters, Ellis, Graatsma, Margo, Hermens, Rosella P.M.G., Hogeveen, Marije, MS Verloskunde, Child Health, Geurtzen, Rosa, Van Heijst, Arno F.J., Draaisma, Jos M.T., Kuijpers, Lindie J.M.K., Woiski, Mallory, Scheepers, Hubertina C.J., Van Kaam, Anton H., Oudijk, Martijn A., Lafeber, Harrie N., Bax, Caroline J., Koper, Jan F., Duin, Leonie K., Van der Hoeven, Marc A., Kornelisse, René F., Duvekot, Johannes J., Andriessen, Peter, Van Runnard Heimel, Pieter J., Van der Heide-Jalving, Marja, Bekker, Mireille N., Mulder-De Tollenaer, Susanne M., Van Eyck, Jim, Eshuis-Peters, Ellis, Graatsma, Margo, Hermens, Rosella P.M.G., and Hogeveen, Marije

Published
2019

48. Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity

Author

Geurtzen, Rosa, primary, van Heijst, Arno F.J., additional, Draaisma, Jos M.T., additional, Kuijpers, Lindie J.M.K., additional, Woiski, Mallory, additional, Scheepers, Hubertina C.J., additional, van Kaam, Anton H., additional, Oudijk, Martijn A., additional, Lafeber, Harrie N., additional, Bax, Caroline J., additional, Koper, Jan F., additional, Duin, Leonie K., additional, van der Hoeven, Marc A., additional, Kornelisse, René F., additional, Duvekot, Johannes J., additional, Andriessen, Peter, additional, van Runnard Heimel, Pieter J., additional, van der Heide-Jalving, Marja, additional, Bekker, Mireille N., additional, Mulder-de Tollenaer, Susanne M., additional, van Eyck, Jim, additional, Eshuis-Peters, Ellis, additional, Graatsma, Margo, additional, Hermens, Rosella P.M.G., additional, and Hogeveen, Marije, additional

Published
2019
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50. Variation in Integrated Head and Neck Cancer Care: Impact of Patient and Hospital Characteristics

Author

van Overveld, Lydia F.J., primary, Takes, Robert P., additional, Braspenning, Jozé C.C., additional, de Jong, Robert J. Baatenburg, additional, de Boer, Jan P., additional, Brouns, John J.A., additional, Bun, Rolf J., additional, Dik, Eric A., additional, van Dijk, Boukje A.C., additional, van Es, Robert J.J., additional, Hoebers, Frank J.P., additional, Kolenaar, Barry, additional, Kropveld, Arvid, additional, Langeveld, Ton P.M., additional, Verschuur, Hendrik P., additional, de Visscher, Jan G.A.M., additional, van Weert, Stijn, additional, Witjes, Max J.H., additional, Smeele, Ludi E., additional, Merkx, Matthias A.W., additional, and Hermens, Rosella P.M.G., additional

Published
2018
Full Text
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