A clinical patient reporting tool: Giving ADPKD patients back their data

Studies of patient participation in medical care suggest that a higher degree of patient involvement can lead to improved health outcomes and more satisfaction with care. For treatment choices in particular, which often involve harms as well as benefits, shared patient-physician treatment decisions are critical to assuring patients are prepared for and committed to the treatment plan. However, tools to facilitate patient inclusion in the clinical care process and shared decision making are not wide-spread or well-tested. Here we developed a clinical patient reporting tool for an autosomal dominant polycystic kidney disease (ADPKD) patient population for whom a new therapy - Tolvaptan, which slows progression but has notable side effects - has recently become available. Pre-development and post-development surveys indicated that a display of relevant individual disease severity indicators over time with benchmarks to similar patients is desired by ADPKD patients and can facilitate communication, improving patient confidence in sharing treatment decisions. Such a patient report is easily transferable to other disease settings and could serve as one aspect of a patient engagement model in clinical centers.