replacement therapy.1 Early phase of ADPKD is often asymptomatic but the development of kidney cysts leads to increased kidney volume, reduced kidney function and eventually follows a relentless course towards endstage kidney disease.2–8 Clinical management Strengths and limitations of this study ► The focus groups allowed in-depth exploration of patients’ views on presymptomatic testing for autosomal dominant polycystic kidney disease and helped to understand their decision-making process. ► The number of participants and the diversity was a strength in this study, including 154 participants across Australia, France and Korea from both stakeholder groups relevant to this study (caregivers and patients). ► Research limitations are common to qualitative research methodology in that the data are not generalisable and are restricted to the expressed thoughts of participants. ► We acknowledge sensitive topics may be discussed at the focus groups and some views may have been suppressed in the focus group setting. on July 8, 2022 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2020-038005 on 10 October 2020. Downloaded from 2 Logeman C, et al. BMJ Open 2020;10:e038005. doi:10.1136/bmjopen-2020-038005 Open access involves pharmacological and lifestyle interventions to control hypertension, slow the progression of cysts, manage complications (kidney and extra-kidney manifestations) and maintain quality of life (QoL).9–11 Diagnosis of ADPKD is usually based on family history, ultrasonography, CT or MRI.12 Testing, however, can facilitate the diagnosis of ADPKD in patients whose kidney phenotypes are atypical or asymptomatic, and in patients with unknown family history. It may also help identify living donors for kidney transplantation.13–15 However, testing has not historically been part of routine care and remains controversial in some countries. Typically, countries used to offer testing when a diagnosis is needed to be confirmed in young patients with unknown family history, for family planning, to determine eligibility for kidney donation, or when the disease presents in childhood or adolescence but testing in adults is overall accepted and encouraged.16 In some countries in Europe and Asia, access to asymptomatic or presymptomatic testing is very restricted or not available.17–20 For the scope of this paper, testing may include any strategy used to identify the presence of ADPKD prior to symptom onset (including genetic tests, blood tests, imaging such as ultrasound, CT, MRI, and so on).13 While testing for ADPKD has the potential to support early intervention, patients can suffer from anxiety and depression from being diagnosed prior to the onset of symptoms.21–24 There are also concerns about potential discrimination with employment and obtaining life insurance, and strains on social and familial relationships.16 The genetic aspect of family planning is emotionally challenging as patients contend with guilt and uncertainty in pursuing parenthood.25 Decision-making about testing is ethically challenging with psychosocial implications, and requires an understanding of the patients’ attitudes, priorities and perspectives of testing. The aim of this study was to describe patient and caregiver perspectives on the value and risks of testing to support the development of strategies and interventions for testing for ADPKD that address their values and needs. METHODS This focus group study was conducted as part of the Standardized Outcomes in Nephrology-Polycystic Kidney Disease (SONG-PKD) initiative.26 This study is focused on perspectives of patients on testing for themselves and/ or their children. We used the Consolidated Criteria for Reporting Qualitative Research to report the study.27 Participant recruitment and selection Participants were recruited across eight centres in Australia (n=3), France (n=4) and Korea (n=1). Participants were eligible if they spoke English (Australia), French (France) or Korean (Korea), were over 18 years old and diagnosed with ADPKD, or a caregiver. Caregiver refers to family member or support person and not their healthcare professional. We purposively sampled participants to capture a diverse range of demographics (age, gender, employment status) and clinical characteristics (stage of chronic kidney disease, age of diagnosis, current treatment, comorbidities and complications). Recruiting clinicians identified patients with ADPKD who could also invite their caregivers. Participants and researchers had no prior relationship. Participants were given information packages to be able to provide informed consent and received reimbursement (US$25— equivalent in local currency) for travel expenses. Patient and public involvement The SONG-PKD initiative26 was developed to ensure outcomes in trials are relevant to patients and other stakeholders. The SONG-PKD Steering Group comprises a multidisciplinary team of healthcare professionals and patients with PKD and was aimed to ultimately develop a core set of outcome domains informed by all stakeholders (including patients) to be reported in all trials in patients with ADPKD.26 Patients on the Steering Group were involved in the initial planning and design of the study. Purposive sampling was done across different centres and patients were able to invite