Ms. Sneha Amin1, Ms. Irene Sangadi1,2, Dr Sayanthooran Saravanabavan1,2, Ms. Alexandra Munt1,2, Prof. Margaret Allman-Farinelli3, Dr. Sunil Badve4, Dr. Neil Boudville5, Ms Helen Coolican6, Dr. Susan Coulshed7, Ms. Sheryl Foster8, Dr. Mangalee Fernando9, Dr. Imad Haloob10, Prof. David Harris1,2, Prof. Carmel Hawley11,12, Dr. Jane Holt13, Dr. Martin Howell14, Dr. Karthik Kumar15, Prof. David Johnson11,12, Dr. Vincent Lee1,2, Dr. Maureen Lonergan13, Dr. Jun Mai16, Dr. Anna Rangan3, Prof. Simon Roger17, Dr. Kamal Sud18, Dr. Allison Tong14, Prof. Vicente Torres19, Dr. Eswari Vilayur20, Prof. Gopala Rangan1,2
1Michael Stern Laboratory for Polycystic Kidney Disease, Westmead Institute For Medical Research, Westmead, Australia, 2Department of Renal Medicine, Westmead Hospital, Western Sydney Local Health District, Westmead, Australia, 3Faculty of Medicine and Health, The Charles Perkins Centre, The University of Sydney, Sydney, Australia, 4Department of Renal Medicine, St George Hospital, Kogarah, Australia, 5Department of Renal Medicine, Sir Charles Gairdner Hospital, Nedlands, Australia, 6PKD Australia, Roseville, Australia, 7North Shore Nephrology, Crows Nest, Australia, 8Department of Radiology, Westmead Hospital, Western Sydney Local Health District, Westmead, Australia, 9Department of Renal Medicine, Prince of Wales Hospital, Eastern Sydney Health District, Randwick, Australia, 10Department of Renal Medicine, Bathurst Hospital, Bathurst, Australia, 11Australasian Kidney Trials Network, University of Queensland at Princess Alexandra Hospital, Woolloongabba, Australia, 12Faculty of Medicine, Princess Alexandra Hospital Southside Clinical Unit, Woolloongabba, Australia, 13Department of Renal Medicine, Wollongong Hospital, Illawarra Shoalhaven Local Health District, Wollongong, Australia, 14School of Public Health, The University of Sydney, Sydney, Australia, 15Gosford Nephrology, Gosford, Australia, 16Department of Renal Medicine, Liverpool Hospital, Southwestern Sydney Local Health District, Liverpool, Australia, 17Renal Research, Gosford, Australia, 18Department of Renal Medicine, Nepean Hospital, Nepean Blue Mountains Local Health District, Kingswood, Australia, 19Translational Polycystic Kidney Disease Center, Mayo Clinic, Rochester, USA, 20Department of Nephrology, John Hunter Hospital, Newcastle, Australia
Aims: To describe the motivations and experiences of participants enrolled in the PREVENT-ADPKD trial to inform strategies for recruitment and retention in future clinical research.
Background: Autosomal dominant polycystic kidney disease (ADPKD) is the most common genetic kidney disease and clinical trials are essential for developing new therapies.
Methods: Participants enrolled in a three-year randomised controlled trial of prescribed water intake were purposively sampled by gender and age to complete a questionnaire and semi-structured interview at the end of the trial. Interviews were transcribed and thematically analysed.
Results: Fifty-one participants (male 51%; median age 48 years old) were included in the study. The overall clinical trial experience was rated positively by the majority (88%) of participants, stating they felt valued as partners of the research process and were treated with respect. The key motivating factors to enroll were to help others and learn about the disease. Participants expected to gain knowledge about ADPKD and the intervention, and anticipated research staff professionalism. Reasons for considering leaving the study were related to family and work issues unrelated to the study impacting time. Several strategies favored retention: multiple study locations, study procedure schedule flexibility, coaching, staff interactions and practical support with parking and reminders. The main burden of the trial was time away from work with lost wages and logistical problems with the 24-hour urine collections.
Conclusion: Participants had clear expectations and the fulfilment of which was linked with satisfaction. Furthermore, participant retention was a balance between perceived benefits and burden of undertaking study procedures. Consideration of these factors in the design of future clinical trials could improve participants’ recruitment and retention.
Biography:
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