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Patient-Reported Outcomes and Experiences Assessment in Women with Breast Cancer: Portuguese Case Study

Author

Listed:
  • Anabela Coelho

    (Comprehensive Health Research Centre (CHRC), Nursing Department, University of Évora, 7004-516 Évora, Portugal
    H&TRC-Health & Technology Research Center, ESTeSL-Escola Superior de Tecnologia da Saúde, Instituto Politécnico de Lisboa, 1549-020 Lisbon, Portugal
    Global Health and Tropical Medicine, Instituto de Higiene e Medicina Tropical, Universidade NOVA de Lisboa, 1099-085 Lisbon, Portugal)

  • Candan Kendir

    (Organisation for Economic Co-Operation and Development, 75016 Paris, France)

  • Eliana Barrenho

    (Organisation for Economic Co-Operation and Development, 75016 Paris, France)

  • Niek Klazinga

    (Department of Public and Occupational Health, Amsterdam UMC, Amsterdam Public Health Research Institute, University of Amsterdam, 1105 AZ Amsterdam, The Netherlands)

  • Cláudia Paiva

    (Breast Unit, Centro Hospitalar e Universitário do Porto, 4099-001 Porto, Portugal)

  • Joaquim Abreu de Sousa

    (Department of Surgical Oncology, Portuguese Oncology Institute of Porto (IPO Porto), 4200-072 Porto, Portugal
    Porto Comprehensive Cancer Center (Porto.CCC) & RISE@CI-IPOP (Health Research Network), 4200-072 Porto, Portugal)

  • Salomé Gonçalves-Monteiro

    (Porto Comprehensive Cancer Center (Porto.CCC) & RISE@CI-IPOP (Health Research Network), 4200-072 Porto, Portugal
    Outcomes Research Lab, Management, Outcomes Research and Economics in Healthcare Group (MOREHealth), Portuguese Oncology Institute of Porto (IPO Porto), 4200-072 Porto, Portugal)

  • Patrícia Redondo

    (Porto Comprehensive Cancer Center (Porto.CCC) & RISE@CI-IPOP (Health Research Network), 4200-072 Porto, Portugal
    Outcomes Research Lab, Management, Outcomes Research and Economics in Healthcare Group (MOREHealth), Portuguese Oncology Institute of Porto (IPO Porto), 4200-072 Porto, Portugal)

  • Ana Bastos

    (Porto Comprehensive Cancer Center (Porto.CCC) & RISE@CI-IPOP (Health Research Network), 4200-072 Porto, Portugal
    Breast Clinic, Portuguese Oncology Institute of Porto (IPO Porto), 4200-072 Porto, Portugal)

  • Armanda Nogueira

    (Porto Comprehensive Cancer Center (Porto.CCC) & RISE@CI-IPOP (Health Research Network), 4200-072 Porto, Portugal
    Quality of Life Office, Portuguese Oncology Institute of Porto (IPO Porto), 4200-072 Porto, Portugal)

  • Fábio Botelho Guedes

    (Instituto de Saúde Ambiental (ISAMB), Faculdade de Medicina, Universidade de Lisboa, 1649-028 Lisbon, Portugal)

  • Andreia Silva Costa

    (Instituto de Saúde Ambiental (ISAMB), Faculdade de Medicina, Universidade de Lisboa, 1649-028 Lisbon, Portugal
    Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), Nursing School of Lisbon (ESEL), 1600-096 Lisbon, Portugal
    Católica Research Centre for Psychological, Family and Social Wellbeing, Faculdade de Ciências Humanas, Universidade Católica Portuguesa, 1649-023 Lisbon, Portugal)

  • Tânia Gaspar

    (Instituto de Saúde Ambiental (ISAMB), Faculdade de Medicina, Universidade de Lisboa, 1649-028 Lisbon, Portugal
    Digital Human-Environment Interaction Labs (HEI-LAB), Universidade Lusófona de Humanidades e Tecnologias, 1749-024 Lisbon, Portugal)

Abstract

In 2020, female breast cancer was the most commonly diagnosed cancer worldwide, representing the type of cancer with the highest incidence among women and the second most common cause of cancer death among women in all OECD countries. The conventional measures addressing the burden of breast cancer by measuring mortality, incidence, and survival do not entirely reflect the quality of life and patients experience when receiving breast cancer care. The main objective of this study is to capture patient-reported outcomes and experiences in women with breast cancer in Portugal using methods developed for international benchmarking purposes, such as the OECD Patient-reported Indicators Surveys. The study included 378 women with breast cancer, with the age distribution being 19.8% aged 15 to 49 years and 80.2% aged 50 years and over. The data collection procedure and analysis followed the “OECD Breast Cancer Patient Reported Outcomes Working Group” protocol, allowing subsequent comparability with data from other OECD member countries. Most women were satisfied with the treatment outcome regarding the shape of their lumpectomy breast when wearing a bra (96.1%) and with the equal size of both breasts (78.3%). Findings on the WHO QOL-BREF showed that women manifest a lower score in well-being when compared with the general population or populations living with chronic diseases. This study shows the feasibility of implementing and using patient-reported metrics (PROM and PREM) in breast cancer services in Portugal. Measuring PROMs and PREMs from Portuguese women receiving breast cancer care provides insightful evidence into the quality and value of cancer care.

Suggested Citation

  • Anabela Coelho & Candan Kendir & Eliana Barrenho & Niek Klazinga & Cláudia Paiva & Joaquim Abreu de Sousa & Salomé Gonçalves-Monteiro & Patrícia Redondo & Ana Bastos & Armanda Nogueira & Fábio Botelho, 2023. "Patient-Reported Outcomes and Experiences Assessment in Women with Breast Cancer: Portuguese Case Study," IJERPH, MDPI, vol. 20(4), pages 1-11, February.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:4:p:2931-:d:1061139
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    References listed on IDEAS

    as
    1. Nancy Devlin;John Appleby, 2010. "Getting the Most out of PROMs: Putting Health Outcomes at the Heart of NHS Decision-Making," Monograph 000220, Office of Health Economics.
    2. Anabela Coelho & Katherine de Bienassis & Niek Klazinga & Susan Santo & Patrícia Frade & Andreia Costa & Tânia Gaspar, 2022. "Mental Health Patient-Reported Outcomes and Experiences Assessment in Portugal," IJERPH, MDPI, vol. 19(18), pages 1-10, September.
    Full references (including those not matched with items on IDEAS)

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