title: Knowledge deficit of patients with stage 1-4 CKD: a focus group study.
abstract: BACKGROUND
  Patients with early-stage chronic kidney disease (CKD) must make lifestyle modifications and adhere to treatment regimens to prevent their progression to end-stage kidney disease. The aim of this study was to elicit the perspectives of patients with stage 1-4 CKD about their disease, with a specific focus on their information needs in managing and living with CKD and its sequelae.
  
  
  METHODS
  Patients with CKD stages 1-4 were purposively sampled from three major hospitals in Sydney, Australia to participate in focus groups. Transcripts were thematically analysed.
  
  
  RESULTS
  From nine focus groups including 38 participants, six major themes were identified: medical attentiveness (shared decision-making, rapport, indifference and insensitivity); learning self-management (diet and nutrition, barriers to physical activity, medication safety); contextualizing comorbidities (prominence of CKD, contradictory treatment); prognostic uncertainty (hopelessness, fear of disease progression, disbelief regarding diagnosis); motivation and coping mechanisms (engage in research, pro-active management, optimism, feeling normal); and knowledge gaps (practical advice, access to information, comprehension of pathology results and CKD diagnosis, education for general practitioners).
  
  
  CONCLUSIONS
  Patients capacity to slow the progression of CKD may be limited by their lack of knowledge about the disease, its comorbidities, psychosocial influences and their ability to interact and communicate effectively with their health-care provider. Support from a multidisciplinary care team, combined with provision of comprehensive, accessible and practical educational resources may enhance patients' ability and motivation to access and adhere to therapeutic and lifestyle interventions to retard progression of CKD.
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Sydney Children's Hospitals Network, Sydney, New South Wales, Australia.
authors.forename: Pamela A
authors.initials: PA
authors.lastname: Lopez-Vargas
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
authors.forename: Richard K S
authors.initials: RK
authors.lastname: Phoon
authors.forename: Steven J
authors.initials: SJ
authors.lastname: Chadban
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Shen
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D003142:Communication; D017281:Cost of Illness; D018450:Disease Progression; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D057220:Health Literacy; D006801:Humans; D007676:Kidney Failure, Chronic / Q000175:diagnosis / Q000209:etiology / Q000517:prevention & control*; D008297:Male; D008875:Middle Aged; D009042:Motivation; D009517:New South Wales; D010349:Patient Compliance; D010353:Patient Education as Topic; D010817:Physician-Patient Relations; D051436:Renal Insufficiency, Chronic / Q000150:complications / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D012307:Risk Factors; D040242:Risk Reduction Behavior; D012648:Self Care; D012720:Severity of Illness Index; D055815:Young Adult
keywords: chronic kidney disease; information; needs