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      Seizing the moment: The time for harnessing electronic patient-reported outcome measures for enhanced and sustainable metastatic breast cancer care is now

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          Abstract

          The sustainability of healthcare systems is under pressure. Unlike care for many other chronic diseases, cancer care has yet to empower patients in effectively self-managing both the medical and emotional consequences of their condition, including adapting to changes in lifestyle and work, which is essential to achieve optimal health and recovery. Although proposed as a potential solution for sustainable healthcare and support for optimal health and recovery already decades ago, practical implementation of digital care lags behind.

          We believe electronic patient reported outcome measures (ePROMs) could play an important role in creating sustainable healthcare, both to guide complex treatment pathways and to empower survivors to self-manage consequences of diagnosis and treatment. That is, ePROMs can be used for screening and monitoring of symptoms, but also for treatment decision-making and to facilitate communication about quality of life. We therefore see opportunities for improvements in quality of care, quality of life, and survival of cancer patients, as well as research opportunities, as ePROMs collection can lead to better understanding of care needs. The ‘10 Actions for Change report’ of the Advanced Breast Cancer Global Alliance stresses a critical need for improvement of care for metastatic breast cancer (MBC) patients. We therefore in this paper focus on MBC care and research.

          Highlights

          • •

            Electronic patient-reported outcome measures (PROMs) in clinical practice can be promising for sustainable healthcare.

          • •

            Implementation of PROMs could address urgently needed improvements for metastatic breast cancer care.

          • •

            This includes improvements in quality of care, quality of life, survival of cancer patients, and research opportunities.

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          Most cited references59

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          Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries

          Hyuna Sung, Jacques Ferlay, Rebecca Siegel … (2021)
          This article provides an update on the global cancer burden using the GLOBOCAN 2020 estimates of cancer incidence and mortality produced by the International Agency for Research on Cancer. Worldwide, an estimated 19.3 million new cancer cases (18.1 million excluding nonmelanoma skin cancer) and almost 10.0 million cancer deaths (9.9 million excluding nonmelanoma skin cancer) occurred in 2020. Female breast cancer has surpassed lung cancer as the most commonly diagnosed cancer, with an estimated 2.3 million new cases (11.7%), followed by lung (11.4%), colorectal (10.0 %), prostate (7.3%), and stomach (5.6%) cancers. Lung cancer remained the leading cause of cancer death, with an estimated 1.8 million deaths (18%), followed by colorectal (9.4%), liver (8.3%), stomach (7.7%), and female breast (6.9%) cancers. Overall incidence was from 2-fold to 3-fold higher in transitioned versus transitioning countries for both sexes, whereas mortality varied <2-fold for men and little for women. Death rates for female breast and cervical cancers, however, were considerably higher in transitioning versus transitioned countries (15.0 vs 12.8 per 100,000 and 12.4 vs 5.2 per 100,000, respectively). The global cancer burden is expected to be 28.4 million cases in 2040, a 47% rise from 2020, with a larger increase in transitioning (64% to 95%) versus transitioned (32% to 56%) countries due to demographic changes, although this may be further exacerbated by increasing risk factors associated with globalization and a growing economy. Efforts to build a sustainable infrastructure for the dissemination of cancer prevention measures and provision of cancer care in transitioning countries is critical for global cancer control.
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            Global surveillance of trends in cancer survival 2000–14 (CONCORD-3): analysis of individual records for 37 513 025 patients diagnosed with one of 18 cancers from 322 population-based registries in 71 countries

            Claudia Allemani, Tomohiro Matsuda, Veronica Di Carlo … (2018)
            In 2015, the second cycle of the CONCORD programme established global surveillance of cancer survival as a metric of the effectiveness of health systems and to inform global policy on cancer control. CONCORD-3 updates the worldwide surveillance of cancer survival to 2014.
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              Cancer treatment and survivorship statistics, 2022

              Kimberly D Miller, Leticia Nogueira, Theresa P. Devasia … (2022)
              The number of cancer survivors continues to increase in the United States due to the growth and aging of the population as well as advances in early detection and treatment. To assist the public health community in better serving these individuals, the American Cancer Society and the National Cancer Institute collaborate triennially to estimate cancer prevalence in the United States using incidence and survival data from the Surveillance, Epidemiology, and End Results cancer registries, vital statistics from the Centers for Disease Control and Prevention's National Center for Health Statistics, and population projections from the US Census Bureau. Current treatment patterns based on information in the National Cancer Database are presented for the most prevalent cancer types by race, and cancer-related and treatment-related side-effects are also briefly described. More than 18 million Americans (8.3 million males and 9.7 million females) with a history of cancer were alive on January 1, 2022. The 3 most prevalent cancers are prostate (3,523,230), melanoma of the skin (760,640), and colon and rectum (726,450) among males and breast (4,055,770), uterine corpus (891,560), and thyroid (823,800) among females. More than one-half (53%) of survivors were diagnosed within the past 10 years, and two-thirds (67%) were aged 65 years or older. One of the largest racial disparities in treatment is for rectal cancer, for which 41% of Black patients with stage I disease receive proctectomy or proctocolectomy compared to 66% of White patients. Surgical receipt is also substantially lower among Black patients with non-small cell lung cancer, 49% for stages I-II and 16% for stage III versus 55% and 22% for White patients, respectively. These treatment disparities are exacerbated by the fact that Black patients continue to be less likely to be diagnosed with stage I disease than White patients for most cancers, with some of the largest disparities for female breast (53% vs 68%) and endometrial (59% vs 73%). Although there are a growing number of tools that can assist patients, caregivers, and clinicians in navigating the various phases of cancer survivorship, further evidence-based strategies and equitable access to available resources are needed to mitigate disparities for communities of color and optimize care for people with a history of cancer. CA Cancer J Clin. 2022;72:409-436.
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                Author and article information

                Contributors
                K.M. de Ligt
                L.B. Koppert
                B.H. de Rooij
                L.V. van de Poll-Franse
                G. Velikova
                F. Cardoso
                Journal
                Journal ID (nlm-ta): Breast
                Journal ID (iso-abbrev): Breast
                Title: The Breast : Official Journal of the European Society of Mastology
                Publisher: Elsevier
                ISSN (Print): 0960-9776
                ISSN (Electronic): 1532-3080
                Publication date PMC-release: 11 February 2024
                Publication date Collection: April 2024
                Publication date (Electronic): 11 February 2024
                Volume: 74
                Electronic Location Identifier: 103676
                Affiliations
                [a ]Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands
                [b ]Department of Surgical Oncology, Erasmus MC Cancer Institute, Dr. Molewaterplein 40, 3015 GD, Rotterdam, the Netherlands
                [c ]Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Godebaldkwartier 419, 3511 DT, Utrecht, the Netherlands
                [d ]Department of Medical and Clinical Psychology, Center of Research on Psychological and Somatic Disorders (CoRPS), Tilburg University, Warandelaan 2, 5037 AB, Tilburg, the Netherlands
                [e ]Leeds Institute of Medical Research at St James's, University of Leeds, St James's University Hospital, Woodhouse Lane, LS2 9JT, Leeds, United Kingdom
                [f ]Leeds Cancer Centre, Leeds Teaching Hospitals NHS Trust, St James's University Hospital, Beckett St, Harehills, LS9 7LP, Leeds, United Kingdom
                [g ]Breast Unit, Champalimaud Clinical Center/Champalimaud Foundation, Avenida Brasília s/n, 1400-038, Lisbon, Portugal
                Author notes
                [∗ ]Corresponding author. K.d.ligt@ 123456nki.nl
                Article
                Publisher Item ID: S0960-9776(24)00007-9 Publisher ID: 103676
                DOI: 10.1016/j.breast.2024.103676
                PMC ID: 10877629
                PubMed ID: 38359564
                SO-VID: 168cd305-549f-427d-91eb-05b601125ead
                Copyright © © 2024 The Authors
                License:

                This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

                History
                Date received : 20 October 2023
                Date revision received : 11 December 2023
                Date accepted : 31 January 2024
                Categories
                Subject: Short Communication

                ScienceOpen disciplines: Obstetrics & Gynecology
                Keywords: metastatic breast cancer,health-related quality of life,patient-reported outcome measures,quality of care,advanced breast cancer,abc global alliance
                Data availability:
                ScienceOpen disciplines: Obstetrics & Gynecology
                Keywords: metastatic breast cancer, health-related quality of life, patient-reported outcome measures, quality of care, advanced breast cancer, abc global alliance

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