Abstract
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.
Highlights
Patients with chronic kidney disease (CKD) commonly have unmet information needs
In this study, we developed a 31-item question prompt sheet (QPS) targeted to patients with moderate CKD to facilitate their engagement in healthcare conversations
In the process of QPS development, CKD patients reported having unmet CKD information needs, corroborating findings from other studies [7, 21], and indicated that they wanted to use a CKD-QPS during their healthcare visits
Summary
Patients 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. Chronic kidney disease (CKD) is associated with poor health outcomes including risk of end-stage kidney disease (ESKD), cardiovascular disease, and death, and affects approximately 14 % of adults in the United States [1]. Interventions that engage patients in their CKD care can improve disease-related outcomes and are critically needed. Patients’ unmet information needs may limit their ability to manage their disease and participate in shared decision-making [7,8,9]. Education about managing CKD is an important component of CKD patient-provider communication [10].
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