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.