OBJECTIVES: Patient involvement in real-world evidence studies can contribute meaningful insights on disease burden, treatments and outcomes. Here, we describe the design of a patient-informed CKD experience interview guide in DISCOVER CKD.

METHODS: DISCOVER CKD (NCT04034992) is a multinational observational study characterising the clinical management and experiences of patients with CKD (retrospective and prospective cohorts). The prospective phase incorporates ~100 telephone-based interviews with patients from Japan, the USA, UK and Spain. Stratified sampling based on CKD stage (including receipt of dialysis), type 2 diabetes and country is employed. To facilitate the interviews, a draft discussion guide was developed by a multidisciplinary team and subsequently reviewed by patients/advocates who commented on clarity, order and relevance of individual sections/questions, and recommended modifications. Patients/advocates were identified from a patient council pool available via the AstraZeneca Patient Partnership Program.

RESULTS: Five patients (3 female) with CKD (Stages 3–5; diagnosed 7–20 years) reviewed the guide (median time reviewing: ∼2.5 h), generally finding it to be well designed. Sections/questions ranked most relevant pertained to diagnosis/disease progression, disease journey/treatments and ongoing experience with CKD, including symptoms and impact. There were recommendations about reordering, removing (e.g. ‘Will you be willing to try new treatments in the future?’), adding (e.g. ‘How physically demanding/strenuous is your job?’), and rewording questions for clarity/simplicity, and ensuring comfort breaks during interviews. Patients’ recommendations were adopted. Upon initiation of patient interviews, responses were assessed regularly using moderator feedback and interview transcripts, allowing question refinement to maximise scientific insights.

CONCLUSIONS: Patient involvement improved the discussion guide by streamlining the type and nature of questions included. This could contribute to a better patient interview experience and lead to generation of more patient-relevant CKD insights.