NDT Advance Access originally published online on April 29, 2008
Nephrology Dialysis Transplantation 2008 23(10):3206-3214; doi:10.1093/ndt/gfn207
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Patients’ priorities for health research: focus group study of patients with chronic kidney disease
1 NHMRC Centre for Clinical Research Excellence in Renal Medicine, Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW 2145 2 School of Public Health, University of Sydney, Sydney, NSW 2006 3 Centre for Population Health, Sydney South West Area Health Service, NSW 2050 4 Centre for Values, Ethics and the Law in Medicine, University of Sydney, NSW 2006 5 Department of Renal Medicine, Western Clinical School, Westmead Hospital, NSW 2145 6 Department of Nephrology, Royal Melbourne Hospital, VIC 7 Department of Nephrology, School of Population Health, University of Queensland, Princess Alexandra Hospital, QLD 8 Royal Prince Alfred Hospital, University of Sydney, NSW, Australia
Allison Tong, NHMRC Centre for Clinical Research Excellence in Renal Medicine, Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW 2145, Australia. Tel: +61-2-98451482; Email: AllisonT{at}health.usyd.edu.au
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Abstract |
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Background. The inclusion of consumer preferences in prioritizing research topics is widely advocated, but prioritization is driven largely by professional agendas.
Methods. Patients with chronic kidney disease (CKD) were purposively sampled from four kidney dialysis and transplant centres in Australia to participate in nine focus groups (three each for pre-dialysis, dialysis and transplant patients), which were conducted from July 2006 to September 2006. Each involved 6–8 participants. Transcripts were coded and thematically analysed to identify recurrent research topics and the participants’ reasons for their choices.
Results. Participants suggested eight research priorities: prevention of kidney disease, better access to and improvement in kidney transplantation, reduction of symptoms of CKD and complications associated with treatment, new technological therapies, psychosocial aspects of living with CKD, whole body not organ-specialized care, and improvement in dialysis and caregiver support. Five major reasons for the selections were identified: normalization of life (developing therapies and regimens that fit into daily living), altruism (considering the welfare of others before personal needs), economic efficiency (channelling resources for maximum economic gain), personal needs (preferences based on feelings, values, personal needs) and clinical outcomes (improving health states and the physiological condition of patients with CKD).
Conclusions. A patient-focused research agenda is possible to elicit for CKD, and by inference for other healthcare issues. Unlike researchers who focus on specific interventions and questions, consumers think in terms of broad themes and quality of life outcomes. Effective methods for translating a patient-focused agenda into research priority setting and resource allocation are now needed.
Keywords: chronic kidney disease; decision making; patient involvement; qualitative research; research priorities
Received for publication: 13. 2.08
Accepted in revised form: 20. 3.08