4| DISCUSSION
In this qualitative study of Chinese self-referral patients with advanced CKD and healthcare professionals, we gave self-referral a broader definition, not just out-of-pocket payment referral but patient-initiative referral with the purpose of minimizing the effect of payment pattern of medical insurance. Although participants described perspectives and experience about self-referral and treatment decision respectively, we identified two groups of contradictions pushing forward self-referral and treatment decision-making: primary healthcare facilities and CKD patient medical needs, high expectation for treatment and reality. In particular, our findings suggest self-referral is one of decision points appearing in the trajectory of ESRD patients, which in turn affects patients’ treatment decision-making. The mediating role of self-referral on decision making, either positive or negative, is up to the quality of self-referral care.
Self-referral decision making was initiated by patients or their families and lasted shorter. This is in contrast to physician-referral decision-making, associated with referral policies and primary care physicians’ belief 24. More recently, other qualitative studies have reported self-referral motives, including advanced healthcare facilities, health concern and organizational issues25-27 . Our study supporting these findings and extend patients’ negative self-referral motives, including going through the motions and catering to families. In fact, some of our findings are consistent with the work by Lovell et al28. about the reasons of older patients delaying dialysis. We found if patients’ attitude were negative and obscure, their families would play a crucial role to make self-referral decision, align with the theme identified by Chen et al.29 that family function of medical seeking and ancillary care.
In our study, participants reported self-referral contributed to the implementation of SDM model in Chinese nephrology field. Although the understanding and perspective of SDM between nephrologists and patients were different, the self-referral exactly stimulated patients’ autonomy and initiative to participate in health-related decisions. Those findings counter work form Rise et al. where they found among patients having a contact for self-referral, there were stronger confidence to cope with disease and more active coping strategies30,31. On the other hand, our results are consistent with Greer et al, our participants reported lack of suboptimal co-management and asymmetric renal replacement therapy resource among primary-secondary hospitals were fundamental barriers to quality of medical decision-making32. On this basis of expanding advanced CKD patients’ options, self-referral is an act to overcome the deficiency of objective conditions. Thus, self-referral patients with advanced kidney disease are more likely to initiate subsequent steps of SDM, including information exchanging and value clarification. Evidence suggests that self-referral patients proactively seeking information about treatment33. In our study, we found self-referral patients were equipped with higher information literacy.
Among self-referral patients with ESRD and HCPs, the perceived psychological pressure varied, but the same intense. Although previous studies have described advanced CKD patients’ high-level perceived distress during decision-making process, we found self-referral placed heavier psychological pressure to staff-patient along with clinic counselling34. Those findings complement Hoffmann et al’ investigation demonstrated self-referral patients had higher level of health anxiety, associate with indistinguishable disease and extend the concerns of anxiety, such as long wait time and cumbersome dictation procedures35. Previous studies demonstrated patients are emotionally fragile, when the expectation and reality of the treatment don’t match36. In our study, both groups described they weren’t quietly sure how to bring high expectation back to reality. Nephrologists indicated self-referral patients or family members half believed their given regimens, which undermines confidence to communicate with patients. As reported by Sun et al37, we found those subtle pressure tense staff-patient relationship. Our study suggest that the situation is more complex and creates a vicious cycle due to poor staff-patient communication.
Cost-benefit trade-off, an integral part of priorities setting, was regarded as a value-based process varying according to decisional circumstances. In our study, participants reported top three cost-benefit considerations that include economic cost, physical functioning cost, returning to society cost. Unlike in Victoor’s research38, participants described great concerns on measuring the benefit of treatment decision for economic evaluation. This finding supports Walker’s study about economic consideration underpin dialysis decisions39. In fact, stakeholders are trying to balance resource allocation and minimize dialysis cost. Other most talked focuses were long-term implication, such as complication and job. Our findings suggest that the process of trade off can be approximately more or less identified according to age, degree of education, supporting the results in Vivian’s study40. Our study is also novel in that it suggests cost-benefit trade-off introduces redicision, whether to downward referral and where to continue treatment. The characteristics of lifelong treatment and Chinese practices to downward referral prompt redecision points emerging41.
Our findings have important implications for clinical practice and research.
Self-referral plays positive role to patient profile, but appropriate self-referral timing is worth pondering on. The blurred lines between early referral for CKD and hierarchical medical system result in excessive self-referral and late referral. After all, it reflects the lack of CKD knowledge among public, enlightening the screening and publicity work need to be strengthened by Chinese primary care professionals. Additionally, the peritoneal dialysis is still in the stage of application and dissemination, not forming a clearly coherent connection. Those findings provide supports to stakeholders in establishment and improvement of nephropathy management.
This research verifies the hypothesis that self-referral has impact on advanced kidney disease patients’ decision-making. To meet the flexibly challenges, researchers need to investigate the status of predialysis service and better understand trajectory of start dialysis. Evidence suggest dialysis decision aids incorporated into predialysis education supports primary physician carrying out CKD patients’ follow-up and implementing predialysis preparation42. On the other hand, renal clinicians should be well-equipped with empathy ability and communication skills instead of completing consultation. As our findings showed, self-referral patients were vulnerable and sensitive to conversations with their clinicians. However, not hard to see self-referral patients are easy to recover if supervising physicians and nurses handle properly. Dialysis transition unit is worth learning, covering physical and emotional care43. We recommend transition clinic at where trained multidisciplinary team provide patient-center care for newly diagnosed ESRD or approaching dialysis patients.
Our study has important limitations. First, the small sample size limited the representativeness of our findings to general nephrologists and patients with advanced kidney disease. Second, the sample included nephrologists from provincial referral hospital, while the primary care professionals weren’t included due to distance restrictions. It is likely that there are difference perspectives among primary care professionals and healthcare professionals. Third, we don’t conduct follow-up interviews to self-referral patients referring to downward hospitals. Thus, we were able to identified the contrast experiences. Lastly, theme saturation was a relative concept and might change over time, healthcare policy and new RRT technology.