Chinese chronic kidney disease (CKD) population is constantly on the
rise along with increasing number of diabetes and hypertensive
patients1,2. China Kidney Disease Network (CK-NET)
2015 Annual Data Report showed that the percentage of hospitalized
patients with CKD accounted for 4.8% among chronic
patients3. If not well detected and managed, CKD may
progress to end-stage renal disease (ESRD), at which stage patients have
to rely on renal replacement therapy (RRT) to maintain physical
functioning. It’s predicted that worldwide amount of RRT usage will more
than doubled by 20304 and each year hundreds of
thousands of ESRD patients is newly registered in European and American5. Advanced CKD patients with whose
eGFR
<30 mL/min/1.73m2 and declining are in
transitional period and dialysis modality decision has been ranked as
their top 10 priorities6,7. Not only that, numerous
decision points are extended in succession surrounding treatment
decisions such as dialysis initiation.
In China, the alternative RRT options include in-center hemodialysis
(HD), peritoneal dialysis (PD), kidney transplantation as well as
conservative kidney management, an
acceptable
option for older ESRD patients. No matter which treatment decision will
affect or even decide patients’ lifestyle and the quality of life.
Consequence of the ultimate decision determines the necessity of
patients involving treatment decision-making progress to implement
shared decision making (SDM)8. However, previous
researches have demonstrated barriers from different perspectives,
including predialysis education, communication and cultural factors9-11. More recently, one study analyzed residential
location played a significant role in treatment decision-making12, which may be applicable to status quo of China. In
fact, the healthcare system in China is a three-level system, consisting
of primary, secondary and tertiary care according to different regions.
Besides, the prevalence of CKD in Chinese rural population is relatively
high and similar to urban population2,13, deepen the
association between CKD health service system and uran-rural areas.
Global clinical practice guidelines recommend early or timely referral
to a predialysis care at least 12 months before patients starting
RRT14. However, there is evidence that ESRD patients
receive dialysis passively without full physical and mental preparation15,16. Studies reported over 50% ESRD patients
undergo urgent dialysis or unplanned dialysis, associated with patients’
poor prognosis and huge societal healthcare burdens17.
As the limit of Chinese nephrology medical resource and patients’
resistance to nephrology preparation, unplanned and crush dialysis are
common for ESRD patients18,19. On the other hand,
self-referral is much more prevalent in the Chinese context of
decentralized CKD management 20. Although Chinese
multi-tiered medical system encourage referral rather than
self-referral20, the urgent challenge for
self-referral patients with advanced CKD and health care professionals
is to conduct RRT decision meetings and make treatment decisions.
Understanding how Chinese patients with advanced CKD to achieve
self-referral and clarify the relationship between self-referral and
treatment decision-making are crucial to nephrology clinical practice
and promote policy reform. Previous researched have focused on referral
or treatment decision-making independently. Therefore, the aim of this
qualitative study was to explore experience and perspectives of advanced
CKD patients and healthcare professionals regarding self-referral and
treatment decision-making.