PMID- 35728438 OWN - NLM STAT- MEDLINE DCOM- 20220914 LR - 20220914 IS - 1532-3080 (Electronic) IS - 0960-9776 (Print) IS - 0960-9776 (Linking) VI - 65 DP - 2022 Oct TI - Breast cancer patients' most important quality of life themes for a radiotherapy decision aid. PG - 8-14 LID - S0960-9776(22)00103-5 [pii] LID - 10.1016/j.breast.2022.06.002 [doi] AB - 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 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. CI - Copyright (c) 2022 The Authors. Published by Elsevier Ltd.. All rights reserved. FAU - Roumen, Cheryl AU - Roumen C AD - Department of Radiation Oncology (Maastro), GROW School for Oncology, Maastricht University Medical Centre+, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands. Electronic address: c.roumen@maastrichtuniversity.nl. FAU - Hasannejadasl, Hajar AU - Hasannejadasl H AD - Department of Radiation Oncology (Maastro), GROW School for Oncology, Maastricht University Medical Centre+, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands. Electronic address: hajar.hasannejadasl@maastro.nl. FAU - Swart, Rachelle AU - Swart R AD - Department of Radiation Oncology (Maastro), GROW School for Oncology, Maastricht University Medical Centre+, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands. Electronic address: rachelle.swart@maastro.nl. FAU - Raphael, Daniela AU - Raphael D AD - Department of Radiation Oncology (Maastro), GROW School for Oncology, Maastricht University Medical Centre+, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands. Electronic address: daniela.raphael@maastro.nl. FAU - Wee, Leonard AU - Wee L AD - Department of Radiation Oncology (Maastro), GROW School for Oncology, Maastricht University Medical Centre+, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands. Electronic address: leonard.wee@maastro.nl. FAU - Sloep, Matthijs AU - Sloep M AD - Department of Radiation Oncology (Maastro), GROW School for Oncology, Maastricht University Medical Centre+, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands. Electronic address: matthijs.sloep@maastro.nl. FAU - van den Bongard, Desiree H J G AU - van den Bongard DHJG AD - Department of Radiation Oncology, Amsterdam University Medical Centers, De Boelelaan 1117 and 1118, 1081 HV, Amsterdam, Amsterdam, the Netherlands. Electronic address: h.j.vandenbongard@amsterdamumc.nl. FAU - Verkooijen, Helena AU - Verkooijen H AD - Division of Imaging and Oncology, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, the Netherlands. Electronic address: H.M.Verkooijen@umcutrecht.nl. FAU - Thijssen, Salina AU - Thijssen S AD - Department of Radiation Oncology (Maastro), GROW School for Oncology, Maastricht University Medical Centre+, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands. Electronic address: salina.thijssen@maastro.nl. FAU - Velting, Mirjam AU - Velting M AD - Dutch Breast Cancer Association, the Netherlands. Electronic address: velting@borstkanker.nl. FAU - Schuurman, Maaike AU - Schuurman M AD - Dutch Breast Cancer Association, the Netherlands. Electronic address: schuurman@borstkanker.nl. FAU - Russell, Nicola S AU - Russell NS AD - Department of Radiotherapy, The Netherlands Cancer Institute- Antoni van Leeuwenhoek Hospital, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands. Electronic address: n.russell@nki.nl. FAU - Fijten, Rianne AU - Fijten R AD - Department of Radiation Oncology (Maastro), GROW School for Oncology, Maastricht University Medical Centre+, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands. Electronic address: rianne.fijten@maastro.nl. FAU - Boersma, Liesbeth J AU - Boersma LJ AD - Department of Radiation Oncology (Maastro), GROW School for Oncology, Maastricht University Medical Centre+, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands. Electronic address: liesbeth.boersma@maastro.nl. LA - eng PT - Journal Article DEP - 20220610 PL - Netherlands TA - Breast JT - Breast (Edinburgh, Scotland) JID - 9213011 SB - IM MH - *Breast Neoplasms/radiotherapy MH - Decision Making MH - Decision Making, Shared MH - Decision Support Techniques MH - Female MH - Humans MH - Pain MH - Patient Participation MH - *Quality of Life PMC - PMC9218231 OTO - NOTNLM OT - Breast cancer OT - Patient empowerment OT - Patient support tool OT - Shared decision making (SDM) COIS- Declaration of competing interest The other authors report no conflicts of interest. EDAT- 2022/06/22 06:00 MHDA- 2022/09/15 06:00 PMCR- 2022/06/10 CRDT- 2022/06/21 18:24 PHST- 2022/03/30 00:00 [received] PHST- 2022/05/23 00:00 [revised] PHST- 2022/06/05 00:00 [accepted] PHST- 2022/06/22 06:00 [pubmed] PHST- 2022/09/15 06:00 [medline] PHST- 2022/06/21 18:24 [entrez] PHST- 2022/06/10 00:00 [pmc-release] AID - S0960-9776(22)00103-5 [pii] AID - 10.1016/j.breast.2022.06.002 [doi] PST - ppublish SO - Breast. 2022 Oct;65:8-14. doi: 10.1016/j.breast.2022.06.002. Epub 2022 Jun 10.