A total of 22 patients with advanced CKD and 8 healthcare professionals were interviewed. Participant characteristics are as presented in table 3 and table 4.
Table 3: Patient Participant Characteristic (N=22)
Variable
|
|
|
Gender
|
Female
|
10 (45.5%)
|
|
Male
|
12 (54.5%)
|
Age
|
18-45
|
8 (36.3%)
|
|
46-64
|
9 (40.9%)
|
|
≥65
|
5 (22.7%)
|
CKD stage
|
4
|
4 (18.2%)
|
|
5
|
18 (81.8%)
|
Marital status
|
Married
|
15 (68.2%)
|
|
Widowed
|
3 (13.6%)
|
|
Single
|
4 (18.2%)
|
Duration of diagnosed CKD
|
≤6 month
|
6 (27.3%)
|
|
6~12 month
|
8 (36.4%)
|
|
>12 month
|
8 (36.4%)
|
Table 4 :HCPs Participant Characteristics (N=8)
Variable
|
|
|
Gender (%)
|
Female
|
5 (62.5%)
|
|
Male
|
3 (37.5%)
|
Specialty (%)
|
Clinician
|
6 (75 %)
|
|
Nurse
|
2 (25 %)
|
Mean Years in Practice, mean(range)
|
|
18.2 (3-38)
|
Our analysis identified the three themes: 1. Self-referral decision making (Sub-themes: self-referral motives; barriers to self-referral; searching for self-referral information) 2. The experience and views of self-referral care (Sub-themes: facilitating shared decision making; imposing psychological pressure; feeling about self-referral communication; challenges on staff-patient relationship); 3. Treatment decision making (Sub-themes: decisional awareness and role; cost-benefit trade-off and redecision); Below we will discuss each theme (also depicted in Fig. 1).
Self-referral decision making
Self-referral motives
That was acknowledged upward referral would provide patients more opportunities to seek for high-quality health care resource, including system resources and capacity. Higher healthcare facility was the default choice when kidney disease out of control.
“Whether medical facilities or specialists were advanced than primary hospitals. If it’s inevitable to adopt replacement, diagnosis and operation should be done accurately and successfully.”(P1)
Especially, newly diagnosed ESRD patients, who were at shock and denial stage, have attempted self-referral to reverse progression of kidney disease. Initial self-referral patients expressed that the strongest consideration was to change the status quo.
“We didn’t really believe existing diagnosis and felt a bit chance to bargaining…. We were so indecisive and resist that we didn’t know what to do. We pinned hope on referral hospitals which were famous for kidney diseases to initiate dialysis as late as possible.” (P5)
Several participants described negative self-referral motives, occurring after definite diagnosis. Self-referral was placebo than health seeking behavior.
“Going to this hospital once each month for monitoring creatinine concentration is my mandatory work while waiting for the dialysis. I know I am at stake…I anticipate the deadline for dialysis.” (P13)
Negative self-referral was mainly decided by families while patients didn’t show strong rebuttal.
“In fact, I was reluctant to refer to this hospital because it was the same anywhere. However, my son tried to persuade me more than once… I just didn’t want to disappoint him.” (P9)
Barriers to self-referral
Participants described self-referral was restricted by various conditions, especially external factors. The most mentioned were distance to referral hospital, economic condition and medical reimbursement. Those unsurmountable factors usually directly leaded to not referral.
“Self-referral can’t be achieved easily for me, because My families had to suspend normal life and ask for leave work. Besides, it was predicted that the medical bills incurred was higher along with lower reimbursement radio. In general, it would take extra medical expenditure and time”. (P19)
Another barrier was a lack of general knowledge of CKD, including symptoms, the severity of illness and such on. Several patients regretted no earlier self-referral.
“If give me another chance, I would go to the top hospitals earlier (cry…). I really didn’t know it was going to happen, so did people around me.” (P12)
HCPs expressed another piece of insight about barriers they felt to self-referral during clinic consultation. Some clinician expressed their expectation of referral timing and renal disease referral system, reflecting systematic barriers.
“Most self-referral patients are at advanced stage, at which phase physicians can’t take more measures to delay disease progression reversibly. However, self-referral patients seem too resist to accept the bad news. If patients can turn to higher authority hospitals earlier for detecting causes, we may be able to slow disease progression”. (H2)
Searching for self-referral information
Although self-referral was put forward by patients or their families, medical professionals remained an important source of information.
“We consulted relatives, my cousin, who worked at another hospital. He recommended the Director of Nephrology. Even now, we keep contact with my cousin”(P8)
The internet was another key channel to obtain information, patients reported they searched for a mass of referral information for choosing hospital and preferred physicians before the referral.
“We look up information on the internet. It is the most convenient way to get the most comprehensive information. Ah, the only downside is we can’t distinguish the truth from falsehood.” (P11)
The experience and views of self-referral care
Facilitating shared decision making
When it came to self-referral, participants expressed that it provided patients with advanced kidney disease whose residential district haven’t widely developed peritoneal dialysis techniques, more options.
“Peritoneal dialysis has been recommended by global nephrologists, However, local hospitals haven’t set up peritoneal dialysis service. In fact, more than a few of ESRD patients prefer this modality. If conditions permit, we hope patients can be entitled to PD’s benefits, so government does.” (H3)
The development of SDM model has actually affected HCPs firstly and HCPs have put more emphasis on patients’ involvement and treatment satisfaction.
“Unlike many years ago, we have done a lot of training, consisting of patient-centered service philosophy, doctor-patient relationship analysis et c.” (H5)
“What moved me was that my doctor asked me details about life, family. Then she talked with other doctors about treatment preference before I put forward the concerns. I felt she understood me.” (P21)
Imposing psychological pressure
It was obviously patients who facing with treatment decisions undertook huge psychological pressure. Patients expressed self-referral have compelled them get into emotional predicament.
“Self-referral made me perceive huge pressures from economy, job and family relationship. etc. The dilemma then was my family members and I couldn’t accept the approaching dialysis, because we have achieved the better treatment by referral.” (P18)
The up and down of self-referral progress and unfamiliar hospital environment also aggravated patients’ nervousness and restlessness mood.
“We didn’t know what to prepare…Many articles of daily use were bought as we used. Most inconvenient of all was accommodation problem for my wife. She had to share a hospital bed with me for saving expense.” (P9)
Not only patients, but also HCPs felt that they were overwhelmed by self-referral patients’ high expectations for treatment.
“one self-referral patient told that he turned to our hospital for hearing about its’ reputation after turning to hospitals in Beijing and Nanjing. I felt too hard to deal with patients’ overconfidence.” (H2)
Feelings about self-referral communication
Self-referral seemed to increase challenges on staff-patient communication because of unfamiliar background and style, gap between communication expectation and busy clinical practice. Patients described that they dealt consultation with physician gingerly, because they didn’t quite clear physicians’ styles.
“I was dying to communicate with doctors about my illness, However, I didn’t know how to organize accurate words. Besides, the biggest problem was I had little chance to talk with my visiting staffs, they were so busy.” (P4)
Several physicians reported the numbers of experienced referral affected the predialysis patients’ disease informing, while patients described the first dialogue about treatment decision as sudden and expected experience.
“I felt a little hard to communicate with first-time referral patients. You know, dialysis wasn’t accepted easily (by patients), maybe second only to cancer, I didn’t sure the first-time referral patients’ responses…hum, crying, anger...” (H3)
“I have already perceived the real situation, but I didn’t want to hear the verdict. However, self-referral has made clinic visit colder for chief physicians’ businesslike manner and stiff communication pattern…” (P10)
Different mastery of CKD disease knowledge among patients determined complexity of communication, especially risk communication. Participants reported there was a contradiction between poor mastery of CKD knowledge and an urgent information desire among more self-referral patients.
“I have little concept about CKD or ESRD, because I was diagnosed advanced CKD several month ago, I even don’t know what is renal replacement treatment. When doctors talked with me, I felt terrible and confused…” (P13)
Challenges on staff-patients relationship
HCPs frankly described that relationships were challenged by distrust and withhold information. A nephrologist described patients approaching dialysis occasionally would disclose the real past medical history for avoiding expensive detections and delaying dialysis, which probably led to not timely diagnosis and treatment. If staff-patients can’t coordinate with conflict about treatment protocols, the built relationship would be drained.
“We gave suggestions for preforming peritoneal dialysis catheterization, However, some patients felt us made a mountain out of molehill. Besides, some referral patients had the thought that after finishing their disease detections, they turned to social acquaintance for help.” (H7)
To a certain extent, staff-patient relationship was challenged by rumor or striking news.
“I have heard negative comments from neighbors. Out of protecting our own interest, I performed as a difficult patient.” (P6)
Treatment decision-making
Decisional awareness and role
Participants reported self-referral stimulated patients’ willingness to involve in their own decision-making. As a nephrologist put it.
“Self-referral patients have put more focus on choosing their own dialysis modalities, they had burning requirement for related knowledge and communication. It signified patients’ the concept of participating decisions have gradually experienced transformation. We were glad to see it...” (H1)
Participants indicated that treatment decision-making should be involved by staff-patient-family jointly, not necessarily decided by one side. Self-referral patients reported that they have strong awareness to acquire disease knowledge and choose suitable option lining with their value and preference, but the ultimate decision maker should be whom can take responsibility for decision, usually staffs.
“Patients should have rights to follow or refused physicians’ suggestions. However, the prerequisite was that we must have full understanding. However, we were at a professional disadvantage than doctors, thus, we should defer to HCPs for the fateful decision.” (P11)
Cost-benefit trade-off and redecision
Participants reported that the priority setting must take demographic factors into account in decision situation. The most mentioned factors were residence and medical insurance related to self-referral.
“Going to hemodialysis centers three times a week is difficult for me to achieve, because I live in remote rural area, at where rural health clinics aren’t equipped with dialysis medicines.” (P5)
“The biggest problem was financial burden…at that moment, What I thought was I chose which dialysis’ health care cost was less. Due to sharp disease in family income, I have been noticing medical insurance reimbursement policy.” (P8)
What’s more, priority setting was possible to trigger redecision about downward referral.
“After long deliberation, I thought peritoneal dialysis was the best choice, but I didn’t ask doctors to operate peritoneal dialysis catheterization immediately until I learn about available follow-up in the near hospitals.” (P12)