title: Patient perspectives of a young adult renal clinic: a mixed-methods evaluation.
abstract: OBJECTIVE
  We aimed to evaluate a young adult renal clinic (YAC) intervention that included a multidisciplinary clinic and social programme.
  
  
  METHODS
  Semi-structured interviews and surveys (Kidney Disease Quality of Life (KDQOL)-36, Time Trade-Off (TTO) and Morisky 8-Item Medication Adherence Questionnaire) were conducted with 15 patients aged 18 to 26 years with chronic kidney disease Stages 1-5, 5D and 5T before and after they attended two YACs.
  
  
  RESULTS
  We identified six themes: gaining confidence (encouraging self-expression, exchanging experiential knowledge, helping others, positive reflection and optimism); social connectedness; appreciating a welcoming environment; competing priorities; avoiding the sick identity; and relational boundaries. There were no significant improvements in the overall utility-based quality of life (QOL) scores (TTO: 0.72 (standard deviation (SD): 0.34) and 0.76 (SD: 0.30), P = 0.70) and the proportion of participants achieving medium to high medication adherence (n = 7, 46.7% vs n = 8, 53.3%, P = 0.72). Similar findings were observed for KDQOL domains.
  
  
  CONCLUSIONS
  The impact of the YAC on QOL and adherence is unclear. However, patients can develop coping mechanisms and derive psychosocial benefits such as optimism. Some are conscious about respecting the privacy of others or want to disassociate themselves from the 'disease'. Strategies to strengthen rapport, confidence and sense of 'normality' and to destigmatize the illness may enhance the effectiveness of a YAC.
authors: Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
authors: Allison
authors: A
authors: Tong
authors: Kate
authors: K
authors: Gow
authors: Germaine
authors: G
authors: Wong
authors: Paul
authors: P
authors: Henning
authors: Robert
authors: R
authors: Carroll
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D001315:Australia; D003151:Community Health Centers; D005260:Female; D006801:Humans; D008297:Male; D055118:Medication Adherence; D017063:Outcome Assessment, Health Care; D017060:Patient Satisfaction; D011788:Quality of Life; D006435:Renal Dialysis; D051436:Renal Insufficiency, Chronic / Q000523:psychology* / Q000628:therapy*; D012649:Self Concept; D012931:Social Environment; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: health service; paediatric nephrology; paediatrics; quality of life; transition to adult care