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      Qualitative assessment of information and decision support needs for managing menopausal symptoms after breast cancer

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          Abstract

          Purpose

          For breast cancer (BrCa) survivors, premature menopause can result from conventional cancer treatment. Due to limited treatment options, survivors often turn to complementary therapies (CTs), but struggle to make informed decisions. In this study, we identified BrCa survivors’ CT and general information and decision-making needs related to menopausal symptoms.

          Methods

          The needs assessment was informed by interpretive descriptive methodology. Focus groups with survivors ( n = 22) and interviews with conventional ( n = 12) and CT ( n = 5) healthcare professionals (HCPs) were conducted at two Canadian urban cancer centers. Thematic, inductive analysis was conducted on the data.

          Results

          Menopausal symptoms have significant negative impact on BrCa survivors. Close to 70 % of the sample were currently using CTs, including mind-body therapies (45.5 %), natural health products (NHPs) and dietary therapies (31.8 %), and lifestyle interventions (36.4 %). However, BrCa survivors reported inadequate access to information on the safety and efficacy of CT options. Survivors also struggled in their efforts to discuss CT with HCPs, who had limited time and information to support women in their CT decisions. Concise and credible information about CTs was required by BrCa survivors to support them in making informed and safe decisions about using CTs for menopausal symptom management.

          Conclusions

          High quality research is needed on the efficacy and safety of CTs in managing menopausal symptoms following BrCa treatment. Decision support strategies, such as patient decision aids (DAs), may help synthesize and translate evidence on CTs and promote shared decision-making between BrCa survivors and HCPs about the role of CTs in coping with menopause following cancer treatment.

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          Most cited references35

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          Interventions for improving the adoption of shared decision making by healthcare professionals.

          Shared decision making (SDM) can reduce overuse of options not associated with benefits for all and respects patient rights, but has not yet been widely adopted in practice. To determine the effectiveness of interventions to improve healthcare professionals' adoption of SDM. For this update we searched for primary studies in The Cochrane Library, MEDLINE, EMBASE, CINAHL, the Cochrane Effective Practice and Organisation of Care (EPOC) Specialsied Register and PsycINFO for the period March 2009 to August 2012. We searched the Clinical Trials.gov registry and the proceedings of the International Shared Decision Making Conference. We scanned the bibliographies of relevant papers and studies. We contacted experts in the field to identify papers published after August 2012. Randomised and non-randomised controlled trials, controlled before-and-after studies and interrupted time series studies evaluating interventions to improve healthcare professionals' adoption of SDM where the primary outcomes were evaluated using observer-based outcome measures (OBOM) or patient-reported outcome measures (PROM). The three overall categories of intervention were: interventions targeting patients, interventions targeting healthcare professionals, and interventions targeting both. Studies in each category were compared to studies in the same category, to studies in the other two categories, and to usual care, resulting in nine comparison groups. Statistical analysis considered categorical and continuous primary outcomes separately. We calculated the median of the standardized mean difference (SMD), or risk difference, and range of effect across studies and categories of intervention. We assessed risk of bias. Thirty-nine studies were included, 38 randomised and one non-randomised controlled trial. Categorical measures did not show any effect for any of the interventions. In OBOM studies, interventions targeting both patients and healthcare professionals had a positive effect compared to usual care (SMD of 2.83) and compared to interventions targeting patients alone (SMD of 1.42). Studies comparing interventions targeting patients with other interventions targeting patients had a positive effect, as did studies comparing interventions targeting healthcare professionals with usual care (SDM of 1.13 and 1.08 respectively). In PROM studies, only three comparisons showed any effect, patient compared to usual care (SMD of 0.21), patient compared to another patient (SDM of 0.29) and healthcare professional compared to another healthcare professional (SDM of 0.20). For all comparisons, interpretation of the results needs to consider the small number of studies, the heterogeneity, and some methodological issues. Overall quality of the evidence for the outcomes, assessed with the GRADE tool, ranged from low to very low. It is uncertain whether interventions to improve adoption of SDM are effective given the low quality of the evidence. However, any intervention that actively targets patients, healthcare professionals, or both, is better than none. Also, interventions targeting patients and healthcare professionals together show more promise than those targeting only one or the other.
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            Breast cancer and hormone-replacement therapy: the Million Women Study

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              Promoting informed choice: transforming health care to dispense knowledge for decision making.

              Ours is an era in which patients seek greater engagement in health care choices, increasing the demand for high-quality information about clinical options. Providing support for informed choice is not straightforward, however, because of challenges faced by clinicians, health systems, and consumers. Greater use of written or electronic tools can help to clarify choices for patients, but decision aids cannot replace the human element in facilitating informed choice. The ideal solution is to couple information with high-quality decision counseling to help patients understand the potential risks, benefits, and uncertainties of clinical options and to assist them in selecting the option that best accommodates their personal preferences. Decision counseling can be offered by 3 types of providers: clinicians who lack formal informed-choice training ("usual care"), clinicians with formal informed-choice training, or trained third parties who function as impartial decision counselors. Controlled studies are needed to determine which model is best, but none appears to be ideal. The health care system cannot truly support informed decision making without correcting the underlying obstacles that impede patient access to needed information. New information technology solutions, training programs, and reimbursement schemes are necessary. Patient demand for guidance will only increase as clinical options multiply and the world of information continues its rapid growth. Today's health care system is unprepared for the convergence of these 2 burgeoning domains, and the need to address systemic deficiencies will grow more urgent over time.
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                Author and article information

                Contributors
                416-946-0915 , 416-978-8511 , lynda.balneaves@utoronto.ca
                Journal
                Support Care Cancer
                Support Care Cancer
                Supportive Care in Cancer
                Springer Berlin Heidelberg (Berlin/Heidelberg )
                0941-4355
                1433-7339
                8 June 2016
                8 June 2016
                2016
                : 24
                : 11
                : 4567-4575
                Affiliations
                [1 ]Centre for Integrative Medicine, Leslie Dan Faculty of Pharmacy, 144 College St., Room 737, Toronto, ON M5S 3M2 Canada
                [2 ]Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Ontario Canada
                [3 ]School of Nursing, University of British Columbia, Vancouver, British Columbia Canada
                [4 ]Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta Canada
                [5 ]Juravinski Cancer Centre, Hamilton, Ontario Canada
                [6 ]British Columbia Cancer Agency, Vancouver, British Columbia Canada
                [7 ]Ottawa Integrative Cancer Centre, Ottawa, Ontario Canada
                [8 ]School of Nursing, University of Ottawa, Ottawa, Ontario Canada
                Article
                3296
                10.1007/s00520-016-3296-x
                5031723
                27278271
                ad4fffa9-de67-4777-8f0f-1ad0607ae260
                © The Author(s) 2016

                Open Access This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License ( http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                : 24 January 2016
                : 30 May 2016
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000150, Canadian Breast Cancer Research Alliance;
                Award ID: 020658
                Award Recipient :
                Categories
                Original Article
                Custom metadata
                © Springer-Verlag Berlin Heidelberg 2016

                Oncology & Radiotherapy
                breast cancer,menopause,information needs,decision support,complementary therapy

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