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      Gaps in Care and Support for Patients With Advanced Breast Cancer: A Report From the Advanced Breast Cancer Global Alliance

      research-article
      , DBE, BSc, DPhil 1 , , MD, PhD 2 , , PhD 3 , , MBBS 4 , , MPA 5 , , EdD, MPH 6 , 7 , , MD 3
      JCO Global Oncology
      Wolters Kluwer Health

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          PURPOSE

          Although new therapeutic options continue to improve disease-related outcomes in advanced breast cancer (ABC), enhanced focus is needed to improve quality of life for patients currently living with ABC.

          METHODS

          In November 2019, a multidisciplinary workshop to explore patient perceptions of their information and support needs was held at the ABC Global Alliance Annual Meeting in Lisbon, Portugal. Ninety-two attendees from 27 countries participated in the workshop.

          RESULTS

          Several key unmet needs were identified and discussed in the workshop, including the following: (1) Significant patient knowledge gaps exist related to the diagnosis and management of ABC, and the availability of patient-focused information to support these gaps in knowledge remains limited. (2) The development of meaningful relationships between patients and health care professionals, and the role of patients in decision making, is often overlooked for patients with ABC. (3) Multidisciplinary care approaches are crucial for patients with ABC; however, these often lack effective coordination. (4) Access to clinical trials for ABC also remains limited. (5) Caregivers, friends, and family members do not receive sufficient guidance to support patients with ABC and manage their own well-being.

          CONCLUSION

          The variety of unmet needs explored in the workshop demonstrates that patients with ABC still face considerable challenges related to quality of care and support, which will not be resolved until tangible action is taken. Issues highlighted in the workshop should be prioritized by working groups to shape the development of community-based solutions. There is a need for the global community to act proactively to maximize awareness of these ongoing unmet needs and existing resources, while socializing and building new initiatives and resources that will help to close these gaps for patients.

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          Most cited references21

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          Global analysis of advanced/metastatic breast cancer: Decade report (2005–2015)

          Approximately 0.5 million people worldwide die from metastatic breast cancer (mBC) every year. This manuscript provides an overview on the status of mBC in several regions of the world, highlighting the gaps in care, resources, and support available for patients with mBC. Primary research was conducted in 2015 and 2016, comprising four global qualitative and quantitative surveys of approximately 15,000 individuals in 34 countries. Secondary research was conducted using literature reviews of peer-reviewed publications, patient survey reports, and media or online articles. There have been modest improvements in mBC outcomes over the past decade. Patients are not provided with adequate information about mBC. There is a need for open discussion with patients and caregivers about realistic goals; however, physicians are not trained in communicating with patients about their disease. Maintaining patients' quality of life is a crucial goal; however, this has not improved, and in some cases, may have declined in the past decade. Public awareness and understanding of mBC is limited, with damaging consequences for patients and caregivers. Issues affecting employment remain relevant to patients with mBC and their caregivers. Globally, mBC is associated with a substantial economic burden. Relationships with caregivers are crucial to patients with mBC, and caregiver support needs are often overlooked. A strong and united global effort among healthcare professionals, including clinicians, oncologists, pharmaceutical manufacturers, payers, and policy makers, and with advocates, families, and patients, is necessary to improve the outcome and quality of life for patients with mBC.
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            Improved survival in metastatic breast cancer 1985–2016

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              Reasons for accepting or declining to participate in randomized clinical trials for cancer therapy

              This paper reports on the reasons why patients agreed to or declined entry into randomized trials of cancer following discussions conducted by clinicians in both District General and University Hospitals. Two hundred and four patients completed a 16-item questionnaire following the consultation, of these 112 (55%) were women with breast cancer. Overall results showed that 147 (72.1%) patients accepted entry to a randomized clinical trial (RCT). The main reasons nominated for participating in a trial were that ‘others will benefit’ (23.1%) and ‘trust in the doctor’ (21.1%). One of the main reasons for declining trial entry was that patients were ‘worried about randomization’ (19.6%). There was a significantly higher acceptance rate for trials providing active treatment in every arm 98 (80.6%) compared with those trials with a no treatment arm 46 (60.5%), χ2test P = 0.003. The study outlines a number of factors that appear to influence a patient’s decision to accept or decline entry into an RCT of cancer therapy. An important factor is whether or not the trial offers active treatment in all arms of the study. Communication that promotes trust and confidence in the doctor is also a powerful motivating influence. © 2000 Cancer Research Campaign
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                Author and article information

                Journal
                JCO Glob Oncol
                JCO Glob Oncol
                go
                go
                GO
                JCO Global Oncology
                Wolters Kluwer Health
                2687-8941
                2021
                22 June 2021
                : 7
                : GO.21.00045
                Affiliations
                [ 1 ]Sussex Health Outcomes Research and Education in Cancer (SHORE-C), Brighton and Sussex Medical School, University of Sussex, Brighton, United Kingdom
                [ 2 ]Mater Hospital North Sydney, University of Sydney, Sydney, Australia
                [ 3 ]Breast Unit, Champalimaud Clinical Center/Champalimaud Foundation, Lisbon, Portugal
                [ 4 ]NHMRC Clinical Trials Centre, University of Sydney, Sydney, Australia
                [ 5 ]Pfizer Inc, New York, NY
                [ 6 ]Novartis AG, East Hanover, NJ
                [ 7 ]Columbia University, New York, NY
                Author notes
                Fatima Cardoso, MD, Breast Unit, Champalimaud Clinical Center/Champalimaud Foundation, Av. Brasília, 1400-038, Lisbon, Portugal; e-mail: fatimacardoso@ 123456fundacaochampalimaud.pt .
                Author information
                https://orcid.org/0000-0003-3509-3035
                https://orcid.org/0000-0002-1159-1112
                https://orcid.org/0000-0002-6692-2249
                Article
                GO.21.00045
                10.1200/GO.21.00045
                8457864
                34156869
                f6290c7d-86b3-4467-b648-f13d9733fa0b
                © 2021 by American Society of Clinical Oncology

                Creative Commons Attribution Non-Commercial No Derivatives 4.0 License: https://creativecommons.org/licenses/by-nc-nd/4.0/

                History
                : 28 January 2021
                : 11 April 2021
                : 17 May 2021
                Page count
                Figures: 0, Tables: 5, Equations: 0, References: 30, Pages: 0
                Categories
                SPECIAL ARTICLES
                Breast Cancer

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