BackgroundMany patients with chronic kidney disease (CKD) have insufficient knowledge about CKD, which is associated with poorer health outcomes. Effective patient–provider communication can improve CKD patients' knowledge, thereby augmenting their participation in self-care practices. However, barriers to addressing CKD patients' information needs have not been previously characterized.MethodsAdults with an estimated glomerular filtration rate (eGFR) of <60 mL/min/1.73 m2 or on chronic dialysis or with a kidney transplant were recruited from a Department of Veterans Affairs (VA) nephrology clinic. Semi-structured telephone interviews were conducted to assess patients' CKD information needs and demographic characteristics. A qualitative approach was used to analyze interview transcripts and identify themes pertaining to communication dynamics.ResultsThirty-two patients participated. The mean age of participants was 63 years; most were male (94%) and non-Hispanic white (53%). CKD severity groups represented included CKD-3 (eGFR 30–59 mL/min/1.73 m2; 34%), CKD-4 (eGFR 15–29 mL/min/1.73 m2; 25%), CKD-5 (eGFR <15 mL/min/1.73 m2; 16%), end-stage kidney disease on dialysis (13%) and kidney transplant recipients (12%). Several key themes emerged about barriers to patient–provider communication based on patients' reported care at both VA and non-VA facilities, including patients perceived their role as a ‘listener’, reported limited CKD knowledge, did not understand physicians' explanations and were dissatisfied with the patient–provider relationship.ConclusionsSeveral barriers to patient–provider communication prevent patients from meeting their information needs and perpetuate patient passivity. Future research should evaluate whether interventions that empower CKD patients to actively participate in their care increase knowledge and improve health outcomes.

BackgroundPatients with chronic kidney disease (CKD) commonly have unmet information needs. Greater patient participation in healthcare discussions can address these needs and improve health outcomes. We developed a patient-centered question prompt sheet (QPS) to engage CKD patients in healthcare conversations.MethodsWe conducted a two phase, mixed-methods, cross-sectional study involving semi-structured telephone interviews. Patients with an estimated glomerular filtration rate (eGFR) <60 ml/min/1.73 m2, on dialysis, or with a kidney transplant were recruited from one Veterans Affairs (VA) nephrology clinic. Phase 1 interviews included open-ended questions assessing patients’ CKD-related information needs and generated a preliminary 67-item QPS. Phase 2 interview participants rated the importance of asking each question on a 5-point Likert scale and provided open-ended feedback. All participants rated their willingness to use a CKD-QPS. Input from patient ratings, a multidisciplinary team, and from members of the National Kidney Disease Education Program (NKDEP) Coordinating Panel helped to shorten and refine the QPS. A qualitative thematic approach was used to analyze open-ended responses. Quantitative data were analyzed for means and proportions.ResultsEighty-five patients participated. Most were male (97 %), non-Hispanic white (71 %), and mean age was 67 years. Patients desired more information about CKD, particularly dialysis/transplant, and the relationship between CKD and comorbid medical conditions. The final QPS included 31-questions divided into 7 CKD subtopics. Most patients (88 %) reported being ‘completely’ or ‘very’ willing to use a CKD-QPS in future doctor visits.ConclusionsCKD patients have unmet information needs. We developed a QPS to engage CKD patients in healthcare discussions and to facilitate patient-centered care. Future research should assess whether the CKD-QPS addresses patients’ information needs, enhances doctor-patient communication, and improves health outcomes.Electronic supplementary materialThe online version of this article (doi:10.1186/s12882-016-0362-z) contains supplementary material, which is available to authorized users.