Breast cancer patients' most important quality of life themes for a radiotherapy decision aid
Roumen, Cheryl; Hasannejadasl, Hajar; Swart, Rachelle; Raphael, Daniela; Wee, Leonard; Sloep, Matthijs; van den Bongard, Desiree H J G; Verkooijen, Helena; Thijssen, Salina; Velting, Mirjam; Schuurman, Maaike; Russell, Nicola S; Fijten, Rianne; Boersma, Liesbeth J
(2022) The Breast, volume 65, pp. 8 - 14
(Article)
Abstract
BACKGROUND AND AIM: The BRASA patient decision aid (BRASA-PtDA) facilitates shared decision making for breast cancer patients (BCPs) facing a radiotherapy treatment decision. During evaluations, patients indicated the wish for quantitative information on side effects. Therefore, this study assessed BCPs opinion on which and how information on side effects should
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be incorporated in the BRASA-PtDA. METHODS: A workshop was organized with BCPs (n = 9), researchers (n = 5) and clinicians (n = 3). Subsequently, a survey was sent to BCPs (n = 744) investigating the generalisability of the workshop findings, and posing additional questions. The survey entailed multiple choice questions on quality of life themes, the use of a decision aid and risk communication. RESULTS: The workshop revealed BCPs wish for a layered, all encompassing information system. Information on the impact of side effects on daily life was preferred above the risk of these side effects. The survey revealed that important quality of life (QoL) themes were having energy (81%; n = 605), arm function (61%; n = 452), pain (55%; n = 410). Despite the focus on qualitative effects in the workshop, 89% of the survey respondents also wanted to be informed on individualized risks of side effects. 54% Of the survey respondents had never heard of a PtDA. CONCLUSIONS: BCPs preferred information on the impact of side effects, but also their individualized risks on side effects. Most important QoL themes were having enough energy, arm function and pain. Consequently, the BRASA-PtDA should be reshaped, starting with quality of life themes, rather than side effects.
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Keywords: Breast Neoplasms/radiotherapy, Decision Making, Decision Making, Shared, Decision Support Techniques, Female, Humans, Pain, Patient Participation, Quality of Life, Breast cancer, Patient empowerment, Patient support tool, Shared decision making (SDM), Oncology, Cancer Research, Surgery, Journal Article
ISSN: 0960-9776
Publisher: Churchill Livingstone
Note: Funding Information: This work was supported by ZonMW [project number 427003002 , 2020]. Publisher Copyright: © 2022 The Authors
(Peer reviewed)