Factors influencing access to kidney transplantation (FIAT): an integrative multiphasic stakeholders’ perspective
Ruben van Merweland1, Annemarie Luchtenburg1, Jan van Busschbach Prof.1, Jacqueline van de Wetering Dr. 2, Sohal Ismail Dr. 1.
1Psychiatry, Erasmus MC, Rotterdam, Netherlands; 2Nephrology, Erasmus MC, Rotterdam, Netherlands
Introduction: Kidney transplantation is considered the optimal form of renal replacement therapy. However, in the Netherlands, about sixty percent of patients on dialysis are not actively considered for transplantation, which is difficult to explain based on basic medical variables only. Indeed, various (non-) medical barriers to optimal access to transplantation have been mentioned in literature. Remarkably, no systematic inventory exists on these multiple (non-)medical barriers and the different perspectives on these barriers by these multiple stakeholders’ perspectives. Hence, the present qualitative study presents the various (non-)medical barriers to optimal access to transplantation from different perspectives of multiple stakeholders.
Method: Stakeholders involved in renal care are interviewed in two different phases about attitudes (phase 1) and integrative perspective of the different stakeholders (phase 2) regarding barriers to optimal access to transplantation. The topic list for the interviews contains six themes: psychological, policy, medical, ethical, social, and economic. The interview method followed grounded theory principles.
Results: A total of 117 participants were involved: patients (21), donors (10), social workers (25), nephrologists (22), surgeons (5), nurses (6), policy officers (24) and representatives of insurance companies (4). The following major barriers are typical for the six themes:
Conclusion: According to participants, access to transplantation rely heavily on a well-informed and acting patients, donors and health professionals. Despite the existence of national clinical guidelines, participants report ambiguity about their existence. Decision making by patients and donors is hampered by a lack of information about the different options, fears and difficulty to the complex decision-making process with multiple stakeholders. Financial incentives can influence access as they are not always aimed at encouraging early referral to kidney transplantation. Stakeholders state that access to kidney transplantation could be improved when these issues would be addressed. Next to the results of phase 1, the results of phase 2 (integrative perspective of stakeholders) will be presented.