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230 Development and testing of a culturally-tailored decision aid for risk-reducing salpingo-oophorectomy among BRCA pathogenic variant carriers in Malaysia, a multi-ethnic middle-income country in southeast Asia
  1. Hamizah SA’AT1,2,
  2. Lee Yew Kong3,
  3. Yoon Sook Yee4,
  4. Woo Yin Ling5,
  5. Kristine Barlow-Stewart6,
  6. Nur Aishah Taib1,2
  1. 1Department of Surgery, Faculty of Medicine, Universiti Malaya, Kuala Lumpur, Malaysia
  2. 2University Malaya Cancer Research Institute, Universiti Malaya,Kuala Lumpur, Malaysia
  3. 3Department of Primary Care Medicine, Faculty of Medicine, Universiti Malaya, Kuala Lumpur, Malaysia
  4. 4Cancer Research Malaysia, Subang Jaya, Selangor, Malaysia
  5. 5Department of Obstetrics and Gynecology, Faculty of Medicine, Universiti Malaya, Malaysia
  6. 6Northern Clinical School, Faculty of Medicine and Health, University of Sydney, NSW, Australia

Abstract

Deciphering the decision-making landscape surrounding risk-reducing salpingo-oophorectomy (RRSO) among Malaysian BRCA pathogenic variant (PV) carriers unveils unique needs, notably the influence of spousal dynamics and the cultural significance of marriage. Intervention tools developed in Western contexts may not adequately address socio-cultural considerations for the diverse Malaysian population. This study aims to develop and assess the acceptability, usability, and feasibility of the decision aid (DA) from the perspectives of its target users.

A culturally sensitive DA was developed following the International Patient Decision Aid Standard and Cope in Deliberation framework. The DA was assessed through an acceptability survey comprising 10 items, focusing on comprehensibility, information balance, and overall suitability for decision-making. Semi-structured interviews were conducted to gain an in-depth understanding of the DA’s usability, acceptability, and feasibility.

Fifteen DA target users participated, including 10 BRCA PV carriers without prior RRSO and 5 clinicians with experience managing BRCA PV carriers. The majority (80%) of participants found the DA to contain clear and appropriate information. While all perceived the information as generally comprehensible and sufficient for decision-making, a minority (27%) felt the DA exhibited a bias toward the option of ovary removal. Qualitative insights indicated that the DA provided comprehensible information, enhanced understanding and knowledge for decision-making (acceptability), supported patient-doctor consultations (feasibility), and aided carriers in decision preparedness (usability). Notably, 80% deemed sections addressing emotional impact, religion, and family support essential. Clinicians, however, found some content irrelevant and the presentation overly lengthy, expressing concerns about potential user overwhelm.

The user testing of the DA demonstrated that most target users perceived it as usable, acceptable, and feasible for supporting decision-making on ovarian cancer risk management in Malaysian BRCA PV carriers. Findings from this study offer valuable insights for refining the DA, paving the way for further evaluation in a Risk Management Clinic setting.

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