title: Research priority setting in organ transplantation: a systematic review.
abstract: Barriers to access and long-term complications remain a challenge in transplantation. Further advancements may be achieved through research priority setting with patient engagement to strengthen its relevance. We evaluated research priority setting in solid organ transplantation and described stakeholder priorities. Databases were searched to October 2016. We synthesized the findings descriptively. The 28 studies (n = 2071 participants) addressed kidney [9 (32%)], heart [7 (25%)], liver [3 (11%)], lung [1 (4%)], pancreas [1 (4%)], and nonspecified organ transplantation [7 (25%)] using consensus conferences, expert panel meetings, workshops, surveys, focus groups, interviews, and the Delphi technique. Nine (32%) reported patient involvement. The 336 research priorities addressed the following: organ donation [43 priorities (14 studies)]; waitlisting and allocation [43 (10 studies)]; histocompatibility and immunology [31 (8 studies)]; immunosuppression [21 (10 studies)]; graft-related complications [38 (13 studies)]; recipient (non-graft-related) complications [86 (14 studies)]; reproduction [14 (1 study)], psychosocial and lifestyle [49 (7 studies)]; and disparities in access and outcomes [10 (4 studies)]. The priorities identified were broad but only one-third of initiatives engaged patients/caregivers, and details of the process were lacking. Setting research priorities in an explicit manner with patient involvement can guide investment toward the shared priorities of patients and health professionals.
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
authors.forename: Benedicte
authors.initials: B
authors.lastname: Sautenet
authors.affiliation: Centre for Transplant and Renal Research, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: Jeremy R
authors.initials: JR
authors.lastname: Chapman
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
authors.forename: Claudia
authors.initials: C
authors.lastname: Harper
authors.affiliation: Heart Transplant Unit, St Vincent's Hospital, Sydney, NSW, Australia.|Transplantation Research Laboratory, Victor Chang, Cardiac Research Institute, Sydney, NSW, Australia.
authors.forename: Peter
authors.initials: P
authors.lastname: MacDonald
authors.affiliation: Department of Medicine, University of New South Wales, Sydney, NSW, Australia.
authors.forename: Nicholas
authors.initials: N
authors.lastname: Shackel
authors.affiliation: Crowe Associates Ltd, Oxon, UK.
authors.forename: Sally
authors.initials: S
authors.lastname: Crowe
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
authors.forename: Camilla
authors.initials: C
authors.lastname: Hanson
authors.affiliation: Centre for Health Communication and Participation, La Trobe University, Melbourne, Vic., Australia.
authors.forename: Sophie
authors.initials: S
authors.lastname: Hill
authors.affiliation: Centre for Health Communication and Participation, La Trobe University, Melbourne, Vic., Australia.|School of Preventive Medicine and Public Health, Monash University, Melbourne, Vic., Australia.
authors.forename: Anneliese
authors.initials: A
authors.lastname: Synnot
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
mesh_terms: D035843:Biomedical Research / Q000639:trends*; D017028:Caregivers; D003697:Delphi Technique; D017144:Focus Groups; D006084:Graft Rejection; D006085:Graft Survival; D006297:Health Services Accessibility; D006801:Humans; D007165:Immunosuppression Therapy; D007166:Immunosuppressive Agents / Q000627:therapeutic use; D019520:Living Donors; D016377:Organ Transplantation / Q000009:adverse effects* / Q000379:methods* / Q000523:psychology
chemical_list: D007166:Immunosuppressive Agents
keywords: complications; patient engagement; patient-centered care; research priority setting; transplantation