Perceptions and attitudes toward kidney supportive care among Elderly dialysis patients and medical staff in China：A Qualitative Study

doi:10.21203/rs.3.rs-3099855/v1

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Research Article

Perceptions and attitudes toward kidney supportive care among Elderly dialysis patients and medical staff in China：A Qualitative Study

https://doi.org/10.21203/rs.3.rs-3099855/v1

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published 26 Oct, 2023

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Purpose: kidney supportive care is an newly developing palliative care strategy in the field of kidney disease .To measure the cognition and attitude of dialysis doctors, nurses and elderly patients towards supportive care for patients with end-stage renal disease in China, and to provide support for the implementation of this strategy.

Methods: With a phenomenological method, this qualitative study used semi-structured interviews to interview 18 elderly dialysis patients and 10 medical staff in two Class ⅲ Grade A hospitals, and Colaizzi's method was used to conduct coding analysis of the interview results.

Results : We conducted separate interviews with patients and nurses to refine different themes for different groups.For elderly dialysis patients, three themes emerged：（1）Lack of awareness of access to kidney supportive care（2）Hard to accept the kidney supportive care（3）Willing to use the kidney supportive care.For dialysis medical staff , two themes were analyzed：（1）Kidney supportive care has potential clinical value、（2）Practical promotion and application are faced with multiple difficulties.

Conclusions: Our findings provide a comprehensive perspective to measure the recognition of kidney supportive care among patients and medical workers in China.Under the influence of traditional Chinese culture, there are many difficulties in the promotion and application of kidney supportive care in our country.Although the dialysis physicians and nurses expressed the support for kidney supportive care, the patients' Perceptions of this treatment mode was insufficient at present, and it should be further developed based on the actual medical conditions .

kidney supportive care

Palliative care

ESRD

elderly patients

qualitative study

According to the latest epidemiological survey data^[1],the global prevalence of chronic kidney disease(CKD) has reached 9.1%, the total number of patients as high as 700 million.The prevalence rate in China is about 10.8%, with a total population of 132.3 million^[2].CKD is projected to become the fifth most common risk factor for life expectancy impairment worldwide by 2024^[3]. As the disease progresses and renal impairment worsens^[4], CKD progressed to end-stage renal disease (ESRD)when the glomerular filtration rate (eGFR) was ≤ 20 mL/min/1.73 m².ESRD patients need renal replacement therapy(dialysis or renal Transplantation, RRT) to maintain normal function, and More than 1.4 million people worldwide receive RRT^[5].

Although RRT provides alternative support for the survival and development of patients with advanced renal disease, it is also highly invasive and injurious to patients^[6]. The UK Kidney Registry study showed that RRT has a five-year survival rate of just 35% for those aged 64 to 74, and less than 20% for those over 75^[7]. After long-term dialysis treatment, patients suffer from pain, fatigue, nausea, anorexia, insomnia and other symptoms, and their nutritional status and physical function are adversely affected, followed by anxiety, depression and other negative emotions^[8]. Elderly patients with ESRD who receive dialysis treatment for a long time will have varying degrees of cognitive dysfunction, and their physical function and nutritional status will deteriorate^[9].In the meanwhile, ESRD patients need long-term maintenance treatment, and the medical cost is high, which brings heavy economic burden to patients and their families^[10].Especially for the elderly patients with ESRD and patients who can no longer tolerate dialysis treatment, the standard of living and quality of life are significantly negatively affected.For patients over 80 years of age,the survival benefits of dialysis do not outweigh the benefits of active supportive care and comprehensive symptom management^[11]. In the meanwhile,studies have shown that active supportive care for elderly patients or those who have undergone long-term dialysis treatment and do not want to continue have positive significance for improving the quality of life of patients with end-stage renal disease^[12].

In recent years, there has been a gradual increase in the research on kidney supportive care with more emphasis on alleviating the pain of the disease and improving the quality of life in late stage^{[13, 14]}.With the development of patients' prognostic awareness, palliative consciousness and shared decision making, kidney supportive care(KSC)provides a new treatment option for patients with ESRD.KSC is primarily for patients with advanced kidney disease for all causes or for any type of dialysis, who may have acute kidney injury or have undergone kidney replacement therapy^[15]. It is a primary palliative care method jointly provided by nephrologists and nurses, palliative care specialists and multidisciplinary teams, with the main purpose of alleviating clinical pain, improving quality of life at the end of life, and providing symptom-based supportive care for patients with advanced renal disease^[16].The kidney supportive care includes the decision to withdraw from dialysis based on shared decision-making with the patient and family, followed by the provision of active clinical symptom management, detailed prognosis communication, advanced care planning and end-of-life care palliative planning, and comprehensive psychosocial and spiritual support^{[11, 17]}.

At present, the application of KSC is mainly concentrated in Canada, the United States, Australia, New Zealand, but the application in China is limited^[18].The project has not been well integrated into the hospice care of ESRD patients at present. Due to the lack of sound policy support and relevant skills training and economic security measures ^[19], the development of KSC in China is relatively late, and the application of palliative care is also less. Its application in China has only been explored in Hong Kong and Taiwan^[20], but there is little relevant studies in mainland.

However, it is vital to assess attitudes and perceptions about the acceptability and feasibility of this strategy before promoting its widespread acceptance among Chinese patients, nephrologists, nursing workers, and policy makers.Therefore, this study used qualitative interview to explore the views and opinions of nephrologists, nurses and dialysis patients in China, and to explore the promotion and implementation of factors and obstacles in China, so as to better advocate KSC.

Study design

This research is a qualitative and exploratory descriptive study, using semi-structured interviews, based on phenomenological research methods and Colaizzi's seven-step analysis method.This study conforms to the uniform standard of qualitative research^[21] .This interview explored the different views of elderly dialysis patients and medical staff regarding KSC in China.

Setting and participants

The interview was conducted from August 2022 to February 2023.Participants were recruited from two nephrology wards and a hemodialysis center at two level iii, Class A general hospital in Zhengzhou and Beijing, China.All the interviewees in this study participated voluntarily by objective sampling.Demographic information of health care workers included age, gender, work type,education level and years of working experience. The demographic information of dialysis patients included age, sex, education level, type of dialysis, years of dialysis, monthly family income, marital status,and so on.When determining the number of interview samples, the qualitative study should be conducted until the data reaches saturation.

Finally, 10 medical personnel were confirmed, including 3 doctors and 7 nurses.18 elderly patients with end-stage kidney disease participated in the interview. A total of 28 interviewees were included. The inclusion and exclusion criteria of medical staff were as follows: (1) having a bachelor's degree or above;(2) More than 5 years of working experience in the field of nephrology;(3)Have enough time to cooperate with the interview.The inclusion criteria of patients were: (1)Patients with end-stage renal disease meeting the diagnostic criteria of K/DOQI guidelines^[22]; (2)Age ≥ 60 years old;(3) Regular dialysis for more than three months;(4) Able to communication and coordination abilities;(5)No cognitive dysfunction;(6) Informed consent and voluntary participation in the study.Exclusion criteria: (1) All kinds of serious complications can not communicate;(2)Severe communication disorders, dementia and other mental diseases can not cooperate;

Data Collection

We used a short questionnaire to collect demographic information on all interviewees. The interview outline of this study was formulated on the basis of extensive reading of relevant literature and research reports.The questions were reviewed by a nursing team with specialized knowledge of qualitative methodologies, including a professor and two researchers. In order to further improve and adjust the interview outline, we selected three medical workers in the field of nephrology and three patients with ESRD for pre-interview, and then used the improved interview guidance to conduct a comprehensive survey.The final interview guidelines for dialysis doctors and nurses consisted of four questions to explore the attitudes and perceptions of medical staff towards KSC in China: (1)Have you ever been in clinical contact with patients using kidney supportive care༟(2)What do you think about kidney supportive care?(3)Do you support the clinical practice of kidney supportive care in China?What's your reasons?(4)What do you think are the hindrance factors and promotion factors in the implementation of kidney supportive care in clinical practice? The final content of the interview with patients with kidney disease is as follows: (1)Would you consider discussing kindey supportive care and why would you? (2)Would you consider receiving and using kidney supportive care,and Why?(3)What other thoughts and concerns do you have about kidney supportive care?(4)Do you think your family would consider supporting you with kidney supportive care ?Why?

The interviews were conducted by two researchers through semi-structured interview guidelines and audio recordings in a quiet consultation room in the hospital ward. All interviewees were informed of the purpose and significance of this study and obtained their written consent.During the interview, we kept a relaxed atmosphere and adopted interview techniques such as questioning, answering, listening and repetition to encourage interviewees to express their true views and feelings.Each interview lasted about 20–40 minutes. During the interview, we recorded what the interviewees said, as well as tone of voice, facial expression, eye changes and body language.When no new topic appeared, we agreed to complete the interview after data saturation.The study was approved by the Ethics Committee of Beijing Friendship Hospital affiliated to Capital Medical University.

Data analysis

After the interview content was collected, it was transcribed within 24 hours, and then Colaizzi's Seven-step analysis was used to analyze the interview data^[23]:(1)Reading the participant's description and transcribing the recorded interview content verbatim into text;(2) Extracting important statements from each description;(3)Deriving meaning from extracted important statements;(4)Organizing these formulated meanings into themes;(5)Collating data results and write analyses for identified themes;(6)The results are returned to all participants for validation;(7)If new relevant data are added,finally form a complete report.

Study Sample

In our study, eighteen patients were interviewed, ranging in age from 61 to 87 years old, including 12 males and 6 females, 15 patients receiving hemodialysis and 3 patients receiving peritoneal dialysis, and the average years of dialysis ranged from 1years to 11 years(Table 1).A total of 10 medical staff were recruited, including 3 doctors and 7 nurses in the field of nephrology, 7 of whom were female.Bachelor degree or above, working years range from 8 to 30 years(Table 2).

Table 1

The Characteristics of patients in face-to-face interview
NO	Gender	Age (years)	Type of dialysis	Dialysis Duration (years)	Educational level	Economic level Income per month (RMB)	marital status	Number of complications	Residence
Patient 1	Female	65	Peritoneal dialysis	3	Primary school	1000 ~ 3000	Married	2	Villages and towns area
Patient 2	Male	78	hemodialysis	7	High school	3000 ~ 5000	Married	3	Urban area
Patient 3	Male	80	hemodialysis	10	Middle school	3000 ~ 5000	Married	3	Urban area
Patient 4	Female	63	Peritoneal dialysis	1	High school	3000 ~ 5000	Married	0	Urban area
Patient 5	Male	84	hemodialysis	9	Primary school	1000 ~ 3000	Married,widowed	2	Villages and towns area
Patient 6	Male	65	hemodialysis	5	Junior high school	3000 ~ 5000	Married	3	Urban area
Patient 7	Male	60	hemodialysis	4	Primary school	1000 ~ 3000	Married	2	Rural area
Patient 8	Female	77	hemodialysis	8	College degree	> 5000	Married	1	Urban area
Patient 9	Male	79	hemodialysis	9	High school	> 5000	Married	2	Urban area
Patient 10	Female	65	hemodialysis	3	Junior high school	3000 ~ 5000	Married	1	Urban area
Patient 11	Male	78	hemodialysis	11	Middle school	3000 ~ 5000	Married	3	Urban area
Patient 12	Female	69	Peritoneal dialysis	4	Junior high school	1000 ~ 3000	Married,divorced	2	Villages and towns area
Patient 13	Male	61	hemodialysis	6	College degree	> 5000	Married	3	Urban area
Patient 14	Male	78	hemodialysis	9	High school	3000 ~ 5000	Married	3	Urban area
Patient 15	Male	87	hemodialysis	10	College degree	3000 ~ 5000	Married	2	Urban area
Patient 16	Male	69	hemodialysis	3	College degree	> 5000	Married	1	Urban area
Patient 17	Female	62	hemodialysis	5	Primary school	1000 ~ 3000	Married,divorced	3	Rural area
Patient 18	Male	71	hemodialysis	8	High school	3000 ~ 5000	Married	2	Urban area

Table 2

The Characteristics of medical staff
NO	Gender	Age (years)	Type of work	Working years	Educational level
Nurse 1	Female	35	Hemodialysis Nurse	13	Bachelor degree
Nurse 2	Male	40	Hemodialysis Nurse	20	Postgraduate degree
Nurse 3	Female	41	Dialysis Nurse	20	Postgraduate degree
Nurse 4	Female	36	Hemodialysis Nurse	12	Bachelor degree
Nurse 5	Female	45	Hemodialysis Nurse	22	Postgraduate degree
Nurse 6	Male	43	Dialysis Nurse	20	Bachelor degree
Nurse 7	Female	50	Hemodialysis Nurse	25	Bachelor degree
Doctor 1	Female	38	Dialysis Doctor	10	Doctor's degree
Doctor 2	Male	55	Dialysis Doctor	30	Doctor's degree
Doctor 3	Female	35	Dialysis Doctor	8	Doctor's degree

Qualitative Results

Two groups were interviewed in this study, and the results were sorted out into two parts, one was the interview results of dialysis patients, the other was the interview results of medical staff. The first part consists of three themes, namely lacking of understanding, hard to accept, and considering to use .The second part consists of two themes.The themes analyzed from different research objects in this study are shown in Table 3.

Table 3

Extrapolation of Themes from Qualitative Data, Illustrating How Relevant Phrases Are Condensed to Codes and Extrapolated to Themes.
Interviewee	Quotations	Theme	Subtheme
For dialysis patients	(1) Would you consider discussing kidney supportive care,and why would you do that? (2)Would you consider receiving and using kidney supportive care,and Why? (3)What other thoughts and concerns do you have about kidney supportive care? (4)Do you think your family would consider supporting you with kidney supportive care ?Why?	(1)Lack of awareness of access to kidney supportive care (2)Hard to accept the kidney supportive care (3)Willing to use the kidney supportive care	λ Low level of education Satisfied with the status quo Insufficient information support λ The desire to continue to live Relatives and family members do not give up λ Suffering from illness Lack of continued economic support The pursuit of quality of life at the end of life
For medical staff	(1) Have you ever been in clinical contact with patients using kidney supportive care༟ (2)What do you think about kidney supportive care? (3)Do you support the clinical practice of kidney supportive care in China?What's your reasons? (4)What do you think are the hindrance factors and promotion factors in the implementation of kidney supportive care in clinical practice?	(1)Kidney Supportive care has potential clinical value (2)Practical promotion and application are faced with multiple difficulties	λ Improve the quality of life at the end of patients Relieve the financial pressure on the family Effective use of medical resources λ The decision to abandon treatment is difficult for the family China's palliative care system for kidney disease is not perfect

Phase I:

1.Lack of awareness of access to kidney supportive care

Low level of education

Due to the influence of education level, patients with low education level and their families have never taken the initiative to learn and contact the content of kidney supportive care. A patient with only a primary school education stated ,“I couldn't read or understand much of this stuff, had never heard of the treatment, and didn't pay much attention to it myself. ”(P1)An older, uneducated patient also said, “I didn't go to school, and I don't know how to read. I couldn't understand what the nurse showed me before, and I couldn't understand what you said.”(P5)However, if both the patient and her family are poorly educated and lack knowledge and awareness of clinical decision-making, which indirectly affects the acceptance of KSC, one patient explained, “We are all less educated, when we come to the hospital, we follow the doctor's advice, we don't know what you said.”(P1)After we introduced the content of kidney supportive care to participants, some patients still find it difficult to understand the content due to limited educational attainment. An older patient who had graduated from high school said, “I don't really understand the effect this treatment can have. I have no idea by myself, and some things are not up to me."(P6)Therefore, some patients with renal disease and their families are limited by their own educational level, lack of awareness of learning and understanding, and have low acceptance of KSC, showing reluctance to try or not consider receiving such treatment in the future.

Satisfied with the status quo

Most patients showed a positive attitude when they were introduced about the KSC, but some patients were satisfied with the current disease status and quality of life, showing a state of indifference. A patient who has just completed a year of dialysis stated,“I have been on dialysis for one year. My health is good and my family supports me well. I haven't thought about these issues yet.”(P4)In the meanwhile ,the patient also said, “At present, my quality of life is relatively high and my condition is stable. My family will also give full support in more ways. I don't want to communicate this topic with my family at the moment.”(P8)In good physical condition, patients and their families will think little about treatment and life, so that the understanding degree of KSC is not enough, temporarily unable to see its benefits, so that its acceptance will be very low.

Insufficient information support

When asked about the KSC, most of the patients said that they had not been exposed to this content before participating in our interview.The three patients all said that they had few opportunities to learn new treatment methods and concepts in daily life(P2/P5/P6) .As P2 pointed out, “I do not know which channels to learn these contents. I don't usually use a smartphone, and I haven't seen anything on TV about kidney care." Especially for patients from remote rural areas, they are affected by economy and environment, and lack of information support.A rural patient who has been receiving hemodialysis treatment in a county-level hospital for a long time said, "When we are in the hospital, the doctors and nurses don't explain these new treatments to us, and we don't know where to learn them ourselves."(P7) An elderly patient also said, “my wife and I live together and are bad using mobile phones. When we have any questions, we always ask our children to inquire, but they are busy with work.I've never heard of supportive therapy for renal disease before, and the kids never mentioned it to us.”(P3)Therefore, there is insufficient information support and uneven distribution of medical resources, and patients in different regions have different understanding of KSC, which requires professional support to promote its acceptance and use.

2.Hard to accept the kidney supportive care

The desire to continue to live

Patients with kidney disease who develop to the end of the year tend to experience severe disease burdens and a decline in quality of life, but some patients still express their desire for life and do not want to give up any treatment to live. A woman who has been on dialysis for many years said:"I don't want to give up dialysis therapy, and I want to maintain it as long as there is a hope of living .My grandchild hasn't been born yet, and I want to see my grandchild come into this world and be there for him."(P10)A patient who had been on dialysis for 10 years and had suffered three rescues realized that he was still alive and that he had a stronger desire to live. He said :“I would continue to receive relief rescue and treatment even though I was physically painful sometimes.”(P15) In the meanwhile, family and financial support gives patients the strength to continue treatment.As P9 claimed,“Although I am very painful, my family's economic level can support me to continue treatment, family members are very supportive in all aspects, I believe that medical science will continue to persist.”

Relatives and family members do not give up

Influenced by traditional Chinese culture and filial piety, family members could not face the death of their loved ones.As pointed out by one dialysis patient, who has been on dialysis for more than 10 years, he noted, “ My family will support him until there is no way to give up. Previous rescues have been successful. We don't want to give up easily, except if there are financial constraints." (P11)One patient who suffered from the disease for years said, "I wanted to give up because of the pain of the disease, but my wife took care of me for so many years.She kept encouraging me to keep going, that as long as I kept getting treatment, there was hope."(P13)

3 .Willing to use the kidney supportive care

Suffering from illness

After a long period of dialysis, most patients report experiencing physical and mental pain and suffering that makes them want SKC, a patient who underwent 4 years of peritoneal dialysis after infection was converted to hemodialysis mentioned, “I have been living on machines, I am really tired, and there are all kinds of complications. I feel very painful every day, and I don't want to accept rescue. If I reach the end of my life, I hope I can go away peacefully."(P12) For highly educated patients, there is an understanding of KSC,as noted by the patient who underwent dialysis for 3 years, “I would like to have palliative care at the end of my life, I am aware of Advance Care Planning, I would like to maintain my personal medical autonomy, and at the end of my life I would like to focus on optimizing my quality of life, not sacrificing my quality of life to prolong my survival.”(P16) A patient with 9 years of dialysis, 11 years of uremia and paraplegia reported, “In usual, it is my family's choice to make decisions, but my current quality of life is very poor, and I have experienced rescue. I want to give up treatment, and I am willing to try it (kidney supportive care), hoping to live a more comfortable life in the future, and do not want to suffer any more.” (P14)This might indicate the fact that Patients who experience painful illness are more receptive to kidney supportive care and are expected to use palliative care to improve the individual's mental and physical pain.

Lack of continued economic support

We found that some patients had insufficient family financial support, and the disease burden and psychological burden were increasing, a divorced rural woman explained,“I have no insurance for medical treatment, no family support, and no ability to earn money myself. I'm under a lot of pressure and physically and mentally exhausted. If I came to the end of my life, I would choose to leave in silence.(P17)A worker on dialysis for three years also said,“Two-thirds of my monthly salary goes to the hospital, and MY life is paid for, It's no big deal to die. I prefer to spend the money on something that makes me happy and comfortable."I come from the countryside, and my family only earns part of their farm income. Every time I think of spending so much money on treatment, I want to give up.”(P7 ) Thus, lack of money can also be an important factor in inducing patients to re-think their treatment.

The pursuit of quality of life at the end of life

After an extended period of treatment, some patients have shown reluctance to accept overtreatment. P15 said, "I really don't want to suffer any more pain at the end of my life, and there is no need to do so when I get old. If I can use KSC to improve the quality of my life at the final stage, I'm willing to do that." One highly educated patient said, "There is no need for excessive medical treatment at the end of life. Excessive medical therapy leads to pain."(P16)Since the euthanasia of cancer patients has been promoted abroad, more and more patients are aware of the pursuit of the quality of life, not the simple pursuit of life.A patient who experienced hemodialysis for 9 years and had the experience of kidney replacement expressed tremendous pain after experiencing cardiac arrest and cardiopulmonary resuscitation. The patient discussed with her husband about her will at the end of life and could calmly face death and hope to face the future and illness peacefully (P18).

Phase Ⅱ:

1.Kidney Supportive care has potential clinical value

Improve the quality of life at the end of patients

Although alternative kidney therapy extends the life span of ESRD patients, it also causes a series of complications.The quality of life of some patients is greatly affected, and even elderly patients cannot tolerate dialysis.KSC focuses on optimizing quality of life, active symptom management of patients, and continuous assessment of patients' quality of life as the disease progresses.Therefore, Nurse 1 acknowledged the value of KSC, saying, "The mandatory extension of life without quality is in some ways meaningless. It is better to respect the wishes of patients and prolong life at the end of life."

Relieve the financial pressure on the family

Due to the high cost of kidney replacement therapy, and the reimbursement ratio in China varies slightly according to local policies.With the gradual aggravation of the disease, the corresponding medical costs are also rising, which brings huge economic burden to patients and families.KSC emphasizes early control and early intervention to reduce the occurrence of complications, which can reduce the expenditure of treatment costs to some extent.Nurse 4 also recognized the role of KSC, "The kidney has a strong function, even when it reaches the advanced stage, it can still use good diet control and drug treatment intervention into the dialysis period, which can reduce the burden of patients economically."Nurse 7 also said, "KSC can help elderly patients to finish their final journey at home without tiring and economic consumption, which is beneficial to reducing the financial burden of patients and their families."

Effective use of medical resources

China has a large population of CKD patients and an uneven distribution of medical resources in various areas. Strengthening and improving symptom management can maintain disease status and improve health-related quality of life in patients.Through early diagnosis and early treatment, KSC provides positive supportive strategies to optimize the allocation of medical resources so that patients can get more effective treatment and care. Nurse 2 agrees that KSC can reduce the consumption of medical resources and is helpful in reducing the spending of national medical insurance funds. Nurse 5 said, "While the implementation of the KSC faces many challenges and controversies, it is sure to be useful and useful in saving medical resources."

2.Practical promotion and application are faced with multiple difficulties

The decision to abandon treatment is difficult for the family

The growing physiological and psychological burden at the end of life seriously diminishes the quality of life of patients with ESRD. During the special period from illness to death, it is a dilemma for patients and their families to choose whether to continue dialysis treatment or to opt out of dialysis for KSC.Influenced by traditional Chinese culture, neither family members nor patients can discuss life and death in a positive way. Doctor 2 said that "in clinical work, during the discussion of life and death issues with family members and patients, they would choose to avoid the attitude." Nurse 6 also stated that "from the traditional perspective of family affection, it is difficult for many family members to forgo patient treatment."

China's palliative care system for kidney disease is not perfect

Palliative care started late in mainland China, and the awareness rate of medical staff, patients and family members to palliative care is generally low.Nurse 3 thought that “it was unlikely that KSC would be implemented in hospitals, where the main purpose was to treat diseases and maintain life. In the current medical environment in China, palliative care tends to be carried out in hospice hospitals or hospice wards, and it is still faced with many difficulties when it is widely carried out in Grade-III hospitals.” Doctor 1 also believed that "if the patient gave up dialysis treatment, the survival cycle would be affected. Patients and their families have a strong desire for survivorship. I think it will be challenging for patients to choose conservative treatment when implementing KSC in our country." Doctor 3 said that “palliative care for kidney disease was different from palliative care for cancer.The development of palliative care in ESRD patients is relatively slow, and the level of palliative awareness of patients and their families is low, so it is difficult to carry out the implementation of KSC.”

This study was the first to explore the attitudes and perceptions of Chinese dialysis medical staff and ESRD patients towards KSC.Through the research results, we found that the cognitive level of Chinese dialysis patients in the field of renal palliative care is low at present, and the medical staff in the field of dialysis also believe that the development of end-stage renal palliative care is also facing many difficulties.However, some patients expressed their need for KSC and recognized that KSC was beneficial to improve the end-stage life quality and reduce the pain of survival. Nephropathy clinicians (doctors and nurses) also acknowledge the importance of KSC in palliative care in China.

The concept of KSC, which was first proposed in 2013^[24], emphasizes patient-centered efforts to prevent and alleviate the suffering of disease and improve the quality of life of end-stage patients through early identification, comprehensive assessment, and attention to patients' physical and psychological problems.In recent years, KSC's growth has been strongest in Canada, the United Kingdom, Australia and New Zealand^[25].A number of studies have actively explored attitudes and opinions on the application of KSC, as well as analyzed the obstacles faced by KSC in the development process and the advantages it brings^[26].Due to the influence of Chinese traditional culture, the development of palliative care in China is slow, and KSC is still in its infancy.However, researchers in Hong Kong and Taiwan have actively explored Chinese culture^[27], while there are few relevant studies in mainland China.Taiwan was the first region in Asia to adopt a law in favor of "natural death", and the Hong Kong government also supports the policy of palliative care.Studies have proved that the development of palliative care can help patients understand their own conditions and prognosis, and have a positive impact on improving the quality of life of patients^[28].At the same time, it can reduce excessive medical treatment and waste of medical resources, which provides inspiration and reference for the development of palliative care in mainland China^[29].

The patients interviewed in this study did not know enough about KSC, but held a positive and accepting attitude.The ESRD patients in this study have a high demand for palliative care, but the current medical demand and social support are insufficient in china^[30].The consciousness of participating in medical decision-making rights of Chinese patients is weak.In the process of disease development, patients and their families often believe that doctors are the authorities, and lack the awareness of assessing the prognosis of the disease and sharing decision-making with doctors^[31].

In the conventional cultural context, death is a taboo issue. Patients and families cannot rationally face death, and even if the patient enters the end of life, the family can't properly talk about the patient's life wishes^[32].At the same time, in the context of Chinese filial piety culture, family members do not consider the pros and cons of end-stage life support treatment and maintain the concept of rescue no matter what, which brings great economic burden to the family and waste of medical resources^[33].

The medical staff interviewed in this study indicated that they supported the value of KSC in the palliative treatment of kidney diseases, but also suggested that the development of KSC in mainland China is facing a big dilemma.The development of KSC in China needs to be actively explored in combination with China's cultural background. First of all, public education should be strengthened to improve the public's understanding and support for palliative care.The establishment of specialized palliative care teams in the field of renal diseases, and the establishment of organizational frameworks at different levels from the hospital to the community.Use professional team building to promote public education and encourage patients and family members to participate in discussions and learn about KSC^[34].To give full play to the guiding role of policies^[35], government departments need to formulate policies to promote the development of palliative care and improve the quality of old-age care services.To clarify the division of responsibilities among government, society and family, and provide policy support for the development of specialized palliative care of kidney disease.Secondly,we should fully integrate KSC with our traditional culture, actively investigate the needs of Chinese kidney patients for KSC, and determine the best mode of application of KSC in our clinical practice, so as to meet the needs of patients and their families to the greatest extent^[36].Finally, international cooperation should be strengthened to further determine the development path of palliative medicine in end-stage renal diseases, optimize the admission criteria and implementation content of KSC, and reach international consensus on the application of KSC, so as to promote the consistency of clinical practice, research and policy.

At present, KSC is an emerging medical concept on an international scale.The treatment of KSC in patients with ESRD towards the end of life is a research direction that needs to be further explored.KSC is not only palliative care for ESRD patients, but an upgrade to palliative care.Through dynamic tracking of patients' changes, patients can be provided with step-by-step medical support until their life will is expressed, so as to provide more comprehensive medical support for ESRD patients.Due to the immature legal policies, medical environment and cognitive awareness in the field of kidney disease, the development of KSC in our country has just started, so the future development of KSC will have to go through a long process.We should actively explore the implementation path and content of KSC under the background of Chinese culture, strengthen the cognitive level of patients and medical staff on KSC, improve the policy support in related fields, and actively promote and apply KSC.

Acknowledgments

Not applicable.

Authors’ contributions

Participate in project design, literature review, informed consent, interview, data collation and paper writing:Xue Li；Participate in project design, pre-interview, expert consultation, interview and paper writing:Jin Kai Luo.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by the Key medical Specialty (Key cultivation specialty) of the 2021 "Yang Fan" Plan of Beijing Hospital Administration Center (ZYLX202102).

Availability of data and materials

The data that support the fndings of this study are available from the cor[1]responding author,Luo, upon reasonable request.

This study was conducted in accordance with the principles contained in the Guidelines for Good Clinical Practice in the Declaration of Helsinki.This study was approved by the Ethics Committee of Beijing Friendship Hospital Affiliated to Capital Medical University.All subjects agreed to participate in the study after being informed orally and in writing of the objectives and procedures of the study.Informed consent was obtained from all participants.

Consent for publication

Not applicable.

Competing interests

The authors have no conficts of interest to declare.

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No competing interests reported.

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published 26 Oct, 2023

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Editorial decision: Major revision
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Perceptions and attitudes toward kidney supportive care among Elderly dialysis patients and medical staff in China：A Qualitative Study

Status:

Journal Publication

Version 1

Abstract

INTRODUCTION

Methods

Study design

Setting and participants

Data Collection

Data analysis

Results

Study Sample

Qualitative Results

1.Lack of awareness of access to kidney supportive care

Low level of education

Satisfied with the status quo

Insufficient information support

2.Hard to accept the kidney supportive care

The desire to continue to live

Relatives and family members do not give up

3 .Willing to use the kidney supportive care

Suffering from illness

Lack of continued economic support

The pursuit of quality of life at the end of life

1.Kidney Supportive care has potential clinical value

Improve the quality of life at the end of patients

Relieve the financial pressure on the family

Effective use of medical resources

2.Practical promotion and application are faced with multiple difficulties

The decision to abandon treatment is difficult for the family

China's palliative care system for kidney disease is not perfect

Discussion

Conclusion

Declarations

References

Additional Declarations

Status:

Journal Publication

Version 1