Breast (Oct 2024)
DCIS knowledge of women choosing between active surveillance and surgery for low-risk DCIS
- E.G. Engelhardt,
- R.S.J.M. Schmitz,
- M.A. Gerritsma,
- C.M.T. Sondermeijer,
- E. Verschuur,
- J.H.E. Houtzager,
- R. Griffioen,
- N. Bijker,
- R.M. Mann,
- V. Retèl,
- F.H. van Duijnhoven,
- J. Wesseling,
- E.M.A. Bleiker,
- Alastair Thompson,
- Serena Nik-Zainal,
- Elinor J. Sawyer,
- Helen Davies,
- Andrew Futreal,
- Nicholas Navin,
- E. Shelley Hwang,
- Jos Jonkers,
- Jacco van Rheenen,
- Fariba Behbod,
- Esther H. Lips,
- Marjanka Schmidt,
- Lodewyk F.A. Wessels,
- Daniel Rea,
- Proteeti Bhattacharjee,
- Hilary Stobart,
- Deborah Collyar,
- Donna Pinto,
- Marja van Oirsouw,
- S. Alaeikhanehshir,
- L. Elshof
Affiliations
- E.G. Engelhardt
- Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands; Division of Molecular Pathology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands
- R.S.J.M. Schmitz
- Division of Molecular Pathology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands
- M.A. Gerritsma
- Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands
- C.M.T. Sondermeijer
- Biometrics Department, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands
- E. Verschuur
- Borstkanker Vereniging Nederland (breast cancer patient association), Domus Medica, Marecatorlaan 1200, 3528 BL Utrecht, the Netherlands
- J.H.E. Houtzager
- Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands
- R. Griffioen
- Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands
- N. Bijker
- Department of Radiation Oncology, Amsterdam University Medical Center, Amsterdam UMC, locatie AMC, Meibergdreef 9, 1105 AZ Amsterdam Zuidoost, Amsterdam, the Netherlands
- R.M. Mann
- Department of Radiology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands; Department of Radiology, Radboud University Medical Center, Geert Grooteplein Zuid 10, 6525 GA Nijmegen, the Netherlands
- V. Retèl
- Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands
- F.H. van Duijnhoven
- Department of Surgery, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands
- J. Wesseling
- Division of Molecular Pathology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands; Department of Pathology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands; Department of Pathology, Leiden University Medical Center, Albinusdreef 2, 2333 ZA Leiden, the Netherlands
- E.M.A. Bleiker
- Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands; Department of Clinical Genetics, Leiden University Medical Center, Albinusdreef 2, 2333 ZA Leiden, the Netherlands; Department op Clinical Genetics, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands; Corresponding author. Department of Clinical Genetics Leiden University Medical Center Albinusdreef 2, 2333 ZA Leiden, the Netherlands.
- Alastair Thompson
- Baylor College of Medicine, Houston, TX, USA
- Serena Nik-Zainal
- University of Cambridge, Cambridge, UK
- Elinor J. Sawyer
- King's College London, London, UK
- Helen Davies
- University of Cambridge, Cambridge, UK
- Andrew Futreal
- Anderson Cancer Center, Houston, USA
- Nicholas Navin
- Anderson Cancer Center, Houston, USA
- E. Shelley Hwang
- Duke University School of Medicine, Cancers 2022, 14, 3259 10 of 13 Durham, NC, USA
- Jos Jonkers
- Netherlands Cancer Institute, Amsterdam, the Netherlands
- Jacco van Rheenen
- Netherlands Cancer Institute, Amsterdam, the Netherlands
- Fariba Behbod
- Kansas University Medical Center, Kansas, USA
- Esther H. Lips
- Netherlands Cancer Institute, Amsterdam, the Netherlands
- Marjanka Schmidt
- Netherlands Cancer Institute, Amsterdam, the Netherlands
- Lodewyk F.A. Wessels
- Netherlands Cancer Institute, Amsterdam, the Netherlands
- Daniel Rea
- University of Birmingham, Birmingham, UK
- Proteeti Bhattacharjee
- Netherlands Cancer Institute, Amsterdam, the Netherlands
- Hilary Stobart
- Independent Cancer Patients' Voice, UK
- Deborah Collyar
- Patient Advocates in Research, USA
- Donna Pinto
- dcis411, USA
- Marja van Oirsouw
- Borstkanker Vereniging Nederland, the Netherlands
- S. Alaeikhanehshir
- Netherlands Cancer Institute, Amsterdam, the Netherlands
- L. Elshof
- Netherlands Cancer Institute, Amsterdam, the Netherlands
- Journal volume & issue
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Vol. 77
p. 103764
Abstract
Background: Ductal carcinoma in situ (DCIS) can progress to invasive breast cancer (IBC), but often never will. As we cannot predict accurately which DCIS-lesions will or will not progress to IBC, almost all women with DCIS undergo breast-conserving surgery supplemented with radiotherapy, or even mastectomy. In some countries, endocrine treatment is prescribed as well. This implies many women with non-progressive DCIS undergo overtreatment. To reduce this, the LORD patient preference trial (LORD-PPT) tests whether mammographic active surveillance (AS) is safe by giving women with low-risk DCIS a choice between treatment and AS. For this, sufficient knowledge about DCIS is crucial. Therefore, we assessed women's DCIS knowledge in association with socio-demographic and clinical characteristics. Methods: LORD-PPT participants (N = 376) completed a questionnaire assessing socio-demographic and clinical characteristics, risk perception, treatment choice and DCIS knowledge after being informed about their diagnosis and treatment options. Results: 66 % of participants had poor knowledge (i.e., answered ≤3 out of 7 knowledge items correctly). Most incorrect answers involved overestimating the safety of AS and misunderstanding of DCIS prognostic risks. Overall, women with higher DCIS knowledge score perceived their risk of developing IBC as being somewhat higher than women with poorer knowledge (p = 0.049). Women with better DCIS knowledge more often chose surgery whilst most women with poorer knowledge chose active surveillance (p = 0.049). Discussion: Our findings show that there is room for improvement of information provision to patients. Decision support tools for patients and clinicians could help to stimulate effective shared decision-making about DCIS management.
