Patient delay in chronic kidney disease: A qualitative study

Abstract

This study aimed to investigate the reasons for patient delay in chronic kidney disease (CKD) and provide a scientific basis for implementing effective interventions. With the adoption of the phenomenological method in qualitative research, semi-structured, face-to-face interviews were conducted with 14 cases, and the Colaizzi seven-step analysis method was used to analyze the interview data and refine the themes. A total of 4 themes were obtained, namely, a cognitive explanation of illness, negative psychological emotions, socioeconomic levels, and limited medical resources. The current status of patient delay in chronic kidney disease is serious, and there are various reasons for it. Health management departments and healthcare providers at all levels should pay attention to this situation and provide targeted supportive interventions and health education to help patients establish the correct awareness of medical consultation and effectively improve their quality of survival.

1. Introduction

In recent years, chronic kidney disease (CKD) has been increasing yearly, with the current prevalence of CKD at approximately 8% to 16%.^[1] Some patients with CKD will progress to kidney failure, which is the irreversible decline of kidney function, resulting in the accumulation of water, electrolytes, and metabolic waste in the body.^[2] With CKD developing into kidney failure, there are 2 main treatments to maintain life, kidney transplantation and kidney replacement therapy. However, due to the limited number of transplantable organs, kidney replacement therapy has become the only option for most patients with kidney failure,^[3] which has become a serious public health problem, not only because of the dramatic increase in the therapeutic cost but also because of the substantial economic burden and heavy social pressure on individuals, families, and the country.^[4] Consequently, the timely detection and management of CKD are paramount in mitigating the adverse outcomes associated with the disease.

Patient delay was first proposed by Pack and Gallo^[5] and defined as an interval of ≥3 months between the first detection of symptoms and medical consultation, which has been adopted in most studies.^[6,7] Research indicates that delaying medical care can exacerbate chronic kidney disease, resulting in heightened cardiovascular issues, anemia, bone complications, malnutrition, and a diminished quality of life.^[8] Moreover, CKD tends to manifest at a younger age and advance more swiftly.^[9] Consequently, akin to various chronic ailments, prompt CKD diagnosis and intervention are vital strategies for enhancing patient outcomes.^[10]

Regrettably, existing studies predominantly concentrate on CKD patients’ complications and risk factors, with a paucity of research addressing the delayed medical care behaviors exhibited by these patients. Thus, this study aims to utilize qualitative evidence to delve into the distinct factors influencing delays in seeking healthcare among CKD patients. The findings aim to guide the development of interventions that promote timely healthcare-seeking in this patient population.

2. Methods

2.1. Study design

This study collected data through face-to-face, semi-structured, in-depth interviews, guided by the phenomenological method in qualitative research.

2.2. Setting and time

This study was conducted between June 2021 to October 2021 at 2 tertiary Grade A hospitals in Shanxi Province as the study subjects.

2.3. Participants

In the present study, a purposeful sampling method was used to select 14 patients with CKD, including 6 cases of stage IV and 9 cases of stage V.

The inclusion criteria were patients: (1) an interval of more than 3 months between the discovery of symptoms and medical consultation; (2) diagnosed with CKD stage IV to V; (3) awareness of the disease; (4) aged ≥ 18 years old; (5) good comprehension as well as listening and speaking skills; (6) voluntarily participated in the present study. The exclusion criteria involved patients with severe psychiatric disorders. The sample size was determined based on the concept of data saturation. Finally, 14 patients with CKD were enrolled, and the actual names of the patients were replaced by codes C1–C14.

2.4. Data collection

Before the one-on-one interviews, interviews, the researcher informed the interviewees of the study’s significance, purpose, and confidentiality, and C1 to C14 were used instead of the patients’ real names in the data collection with full respect for the patients and establishment of a good relationship of trust with them. The interviews were conducted within a tranquil and comfortable hospital room setting, with each interview lasting for a duration of 40 to 50 minutes. The researcher introduced the interviews with open-ended questions and gradually narrowed the scope of the questions according to the interviewees’ replies, without inducing commentary language. The interviewees were encouraged to express their true feelings. The entire interview was recorded, along with the main points of the content and accompanying nonverbal expressions (facial expressions, tone of voice).

Face validity for the survey questions was established by scrutiny by the diverse membership of the study team (Nurse with a Master’s Degree and research experts) as well as by ten additional doctors. The main questions in the interview were: Do you know about CKD? How do you feel about your first symptom? Why did you not come to the hospital when you first felt sick? What was your experience before the diagnosis? Were you accompanied and supported by family and friends during your visit? What do you think were the factors that contributed to the delay? What support and assistance would you like to receive during your medical consultation?

2.5. Coding and data analysis of qualitative interviews

After the interviews, the recordings were listened to repeatedly and compiled into textual materials. With the Colaizzi seven-step analysis method, along with a collaborative effort from 2 researchers, the analysis and refinement of themes were performed by systematically examining the main content points extracted from the interviews.^[11] The interview material was read repeatedly to summarize similar statements. The ambiguity in the interview content was confirmed by the interviewee promptly. The interviewees verified the authenticity of the content of the collated information. The interviews were conducted in the participants’ native language, which is Chinese. These interviews were subsequently translated from Chinese to English by the primary researcher. Following this translation, 2 senior team members, proficient in both Chinese and English, conducted a comprehensive cross-verification process to ensure the accuracy of the translations.

3. Results

3.1. Characteristics of participants

The participants consisted of 10 males and 4 females, aged between 28 and 66 years, with an average age of 47 years. The time interval from initial symptoms to medical consultation ranged from 7 to 80 months. The educational backgrounds included 5 cases with elementary school or below, 4 with junior high or high school, and 6 with junior college or above. Four cases were retired, 2 were workers, 3 were farmers, 2 were employees, 2 were unemployed, and 2 were self-employed. There were 6 who lived in cities and 8 in rural areas. Ten cases were married, 2 were single, 1 was divorced, and 1 was widowed (see Table 1). The following analysis results and specific interview content were summarized in Table 2 for comparison purposes.

Table 1.

Participants’ sociodemographic (N = 14).

Number	Gender	Age	Education	Occupation	Residence	Marital status	Delay time (months)
C1	Female	53	High school	Farmer	Rural	Married	14
C2	Male	49	High school	Worker	Rural	Married	20
C3	Female	29	Associate degree	Unemployed	Urban	Married	6
C4	Female	32	Associate degree	Unemployed	Urban	Married	12
C5	Male	56	High school	Retired	Urban	Married	18
C6	Male	65	Junior high school	Farmer	Rural	Married	30
C7	Male	28	Bachelor’s degree	Employees	Urban	Married	8
C8	Female	50	Junior high school	Self-employed	Rural	Married	20
C9	Male	62	Associate degree	Retired	Urban	Married	24
C10	Male	36	Bachelor’s degree	Employees	Urban	Married	12
C11	Male	64	Associate degree	Retired	Urban	Married	28
C12	Male	40	Bachelor’s degree	Self-employed	Urban	Married	12
C13	Female	66	Junior high school	Farmer	Rural	Widowed	24
C14	Female	36	High school	Unemployed	Rural	Married	14

Table 2.

Themes, subthemes and supporting quotes obtained from data analysis.

Themes	Subthemes	Supporting quotes
Cognitive explanation of illness	Lack of disease knowledge	- “I was pregnant, and people around me also had localized swelling during pregnancy. Therefore, I failed to take it seriously and bought some medicine on my own.” (C3)
		- “The edema was caused by less activity after surgery and didn’t realize that there was a problem with my kidneys.” (C5)
	Symptom self-avoidance	- “I hate the smell of disinfectant the most. Those doctors ask me to have exams in case of medical consultation, which costs money and suffering.” (C7)
		- “I was very uncomfortable during a colonoscopy at the hospital before, which was a negative experience for me, so I preferred to take medicine and didn’t want to go to the hospital for a checkup.” (C8)
	Plausible symptom attribution	- “I noticed that my skin was a little darkened and slightly puffy, but I thought it was caused by my fishing some time ago, which was not a big problem. Thus, the medical consultation was delayed for such a long time.” (C10)
		- “My physical fitness has always been very good. After finding that my left hand was more swollen than the right one, I thought it was caused by swimming, which should be no problem.” (C7)
Negative psychological emotions	Negative attitude towards medical consultation	- “Now I have been diagnosed with diabetic nephropathy, which certainly could not be cured, and it would be of no use to seek medical consultation.” (C2)
		- “There is no point in seeking medical consultation.” (C13)
	Strong stigma	- “If I were diagnosed with a disease during my pregnancy, others would gossip about me and label me. I can’t live with the gossip of others.” (C3)
		- “Our peers are all working outside to support the families. They will make fun of me, knowing that I go to the hospital with a disease.” (C12)
	Traditional feudal thoughts	- “Perhaps my fate is that I am destined to have this disease, and it will be no help seeking medical consultation.” (C11)
		- “Maybe my life is doomed to have all the suffering.” (C3)
Limited medical and health resources	Impact of public health emergency	- “Initially, when I felt sick, I wanted to go to the hospital. However, due to the epidemic control during that period, everyone was supposed to stay at home. The hospital was crowded with people, and I was worried about the terrible outcome of being infected.” (C9)
		- “I traveled to other cities for work during the time I felt sick. Due to the epidemic, I had to provide travel and health codes for check-in before entering the hospital. Moreover, I had to be quarantined for 14 days before medical consultation for traveling through medium to high-risk areas. I thought it was too much trouble, and I failed to have a checkup.” (C12)
	Challenges in primary medical care	- “A few months ago, I went to see a doctor who specialized in TCM with the complaint of dizziness. He asked me about my condition and informed me that it was a normal reaction to old age. He prescribed some decoctions for regulation. I thought it was no big problem; thus, I followed the advice and drank the decoctions. There was a period of improvement, and I couldn’t predict that it would become so serious now.” (C11)
		- “I went to consult the doctor in our town, and he said that the abdominal distention and diarrhea might be due to inflammation of the gastrointestinal tract. After taking the medicine for 2 months, it didn’t get better and got even worse.” (C14)

3.2. Cognitive explanation of illness

3.2.1. Lack of disease knowledge.

Patients’ lack of knowledge about CKD made it challenging for them to connect their symptoms with the condition. During the interviews, it became apparent that most of the patients were unaware of the disease and its clinical manifestations. Only 2 patients were able to recognize CKD. More than half of the patients experienced prodromal symptoms, but they often misattributed them to other conditions, leading to delayed consultation. For example, when discussing symptoms like edema, C3 mentioned, “I was pregnant, and people around me also had localized swelling during pregnancy. Therefore, I failed to take it seriously and bought some medicine on my own.” Similarly, C5 believed, “the edema was caused by less activity after surgery and did not realize that there was a problem with my kidneys.”

3.2.2. Symptom self-avoidance.

In the study, 5 patients exhibited psychological resistance towards the disease, particularly regarding hospital visits and medical examinations. For instance, C7 expressed a strong aversion: “I hate the smell of disinfectant the most. Those doctors ask me to have exams in case of medical consultation, which costs money and suffering.” C8 shared a similar sentiment: “I was very uncomfortable during a colonoscopy at the hospital before, which was a negative experience for me, so I preferred to take medicine and didn’t want to go to the hospital for a checkup.”

3.2.3. Plausible symptom attribution.

Four patients in the study offered benign, common-sense explanations for their symptoms, driven by misconceptions about the disease, which resulted in delayed medical consultation. For example, C10 mentioned, “I noticed that my skin was a little darkened and slightly puffy, but I thought it was caused by my fishing some time ago, which was not a big problem. Thus, the medical consultation was delayed for such a long time.” C7 believed her swimming hobby was to blame, saying, “My physical fitness has always been very good. After finding that my left hand was more swollen than the right one, I thought it was caused by swimming, which should be no problem.”

3.3. Negative psychological emotions

3.3.1. Negative attitude towards medical consultation

Some patients with preexisting chronic diseases developed a sense of powerlessness and despair, leading to reluctance to seek medical consultation for CKD. A sense of powerlessness refers to a perception that one’s actions will not have a significant impact on the outcome and a lack of control over the current situation and what will happen shortly.^[12] For example, C2, who had diabetes for over 10 years, expressed, “Now I have been diagnosed with diabetic nephropathy, which certainly could not be cured, and it would be of no use to seek medical consultation.” C13, a seventy-year-old, believed that seeking medical care would be a burden to their children, stating, “and there is no point in seeking medical consultation.”

3.3.2. Strong stigma

Stigma, defined as the subjective prejudice and negative cognitive experiences stemming from the disease’s visible characteristics or physical effects, notably influenced certain patients’ choices to avoid seeking medical consultation.^[13] For C3, the fear of societal judgment played a critical role: “If I were diagnosed with a disease during my pregnancy, others would gossip about me and label me. I can’t live with the gossip of others.” Similarly, C12 refrained from sharing their illness with outsiders due to the potential for ridicule: “Our peers are all working outside to support the families. They will make fun of me, knowing that I go to the hospital with a disease.”

3.3.3. Traditional feudal thoughts

Influenced by traditional fatalistic beliefs, some patients resigned themselves to their fate, believing that their suffering was predestined. For C11, nearing seventy years old, the sentiment was, “Perhaps my fate is that I am destined to have this disease, and it will be no help seeking medical consultation.” C3, affected by familial dynamics, concluded, “Maybe my life is doomed to have all the suffering.”

3.4. Socioeconomic levels

3.4.1. Economic levels.

Most of the cases with patient delays came from rural areas without medical insurance and were under tremendous economic pressure.^[14] C2: “I have diabetes mellitus and have needed to take medication and injections for a long time to control blood glucose, which is already a big financial burden for my children. In case of any other disease, my family really can’t afford it.” C14: “I am the breadwinner of the family. If I lose my job due to illness, my family will have no financial income.” C6: “Although I participate in the new rural cooperative medical care, the reimbursement rate is low. When I get sick, I have to borrow money from other relatives. I have lived long enough that I don’t want to be a burden to my children.”

3.4.2. Social support

The medical consultation behavior was also heavily influenced by family and social support. C7: “I am not yet 30 years old. In case of disease, will I let my parents take care of me? They are also not in good health; I cannot imagine what they will do if I fall ill.” C3: “My son is in elementary school, and my husband works all the time. Thus, I will worry about my family if I’m hospitalized.” C8: “I have always lived in the countryside, and none of my friends know about medicine. When I felt sick and communicated with my neighbors, they kept saying that the young have a strong resistance and high immunity, and there should be nothing wrong. I also accepted these opinions, which resulted in such a long delay.” C10: “My lover and I have a bad relationship, and we just make do with it. If I fell ill, no one will care. Thus, I am not willing to go to the hospital for a checkup.”

3.5. Limited medical and health resources

3.5.1. Impact of public health emergency

During the outbreak of novel coronavirus pneumonia, stringent regulations governing outpatient and inpatient services, a scarcity of medical resources, an imbalanced distribution of healthcare facilities, and the overwhelming public apprehension about the epidemic all contributed to delays in seeking medical care.^[15]

For instance, C9, who contemplated seeking help during illness, encountered challenges related to the pandemic situation. She stated, “Initially, when I felt sick, I wanted to go to the hospital. However, due to the epidemic control during that period, everyone was supposed to stay at home. The hospital was crowded with people, and I was worried about the terrible outcome of being infected.”

Another patient, C12, faced significant hurdles due to his work-related travel. He explained, “I traveled to other cities for work during the time I felt sick. Due to the epidemic, I had to provide travel and health codes for check-in before entering the hospital. Moreover, I had to be quarantined for 14 days before medical consultation for traveling through medium to high-risk areas. I thought it was too much trouble, and I failed to have a checkup.”

3.5.2. Challenges in primary medical care.

In some cases, inadequate diagnostic accuracy and misdiagnosis in local healthcare facilities led to delays in the diagnosis and treatment process.

For example, C11 recounted a previous visit to a traditional Chinese medicine (TCM) specialist when he experienced dizziness. The TCM doctor’s response was not alarming, as he perceived it as a normal consequence of aging. C11 recollected, “A few months ago, I went to see a doctor who specialized in TCM with the complaint of dizziness. He asked me about my condition and informed me that it was a normal reaction to old age. He prescribed some decoctions for regulation. I thought it was no big problem; thus, I followed the advice and drank the decoctions. There was a period of improvement, and I couldn’t predict that it would become so serious now.”

Similarly, C14 sought medical advice in the local town when experiencing symptoms like abdominal distention and diarrhea. However, the doctor’s diagnosis of gastrointestinal tract inflammation, and subsequent treatment, did not lead to any improvement. C14 explained, “I went to consult the doctor in our town, and he said that the abdominal distention and diarrhea might be due to inflammation of the gastrointestinal tract. After taking the medicine for 2 months, it didn’t get better and got even worse.”

4. Discussion

4.1. Strengthen the publicity and education of relevant knowledge

A crucial implication drawn from this study is the need to enhance awareness and education regarding CKD among the population. The study revealed that 12 patients lacked basic knowledge of CKD, contributing to delays in seeking medical care. Research by Philip-Ephraim et al^[16] emphasized the impact of disease-related knowledge on medical consultation timelines, with patients possessing greater knowledge being more prompt in seeking medical advice. Therefore, it is imperative to implement robust information dissemination strategies to alter perceptions and reduce patient delay. This could be achieved by expanding health education initiatives in communities, particularly focusing on chronic urological diseases, including CKD.^[17] Various means, such as health lectures, community broadcasts, promotional brochures, and WeChat platforms, should be employed to cater to diverse populations. Additionally, high-risk individuals with conditions like diabetes mellitus, hypertension, and polycystic kidney disease should undergo regular screenings to promote understanding of CKD, its etiologies, clinical symptoms, and the importance of early medical consultation.^[18]

4.2. Build positive medical awareness

Patients often experience feelings of helplessness and fear, which can negatively influence their perception and medical behaviors. Studies by Lin et al^[19] have shown that stigma and long-term recurring diseases contribute to low self-esteem, depression, and a reluctance to engage in social activities. These factors can significantly impact an individual’s physical and mental health and overall quality of life.^[20] It is essential to address patients’ psychological states, helping them establish a constructive medical awareness, alleviate anxiety, and boost self-esteem.^[21] Providing patients with positive examples and success stories can offer encouragement and enhance their confidence in dealing with diseases, ultimately improving their physical and mental well-being and quality of life.

4.3. Strengthening the level of social support

Patients with CKD who progress to kidney failure often face financial burdens, reduced incomes, and the high costs of regular treatment. Additionally, caregivers may experience feelings of guilt, further impacting the psychological well-being of patients. Research by Pedersen et al^[22] highlighted the importance of support from partners in reducing patient delay, emphasizing that strong social support can lead to more positive behaviors and coping styles. Mobilizing all available social resources to communicate with patients, provide encouragement, and offer support is crucial.^[23] Encouraging family members, particularly spouses, to be involved in the patient’s treatment can have a significant impact. Furthermore, community and grassroots organizations should regularly organize volunteer activities to motivate patients to participate in community engagement, promote self-satisfaction, and reduce negative emotions.^[24] This multifaceted social support approach can contribute to reducing patient delay and improving patients’ overall experiences.

4.4. Improve the level of primary medical care

A significant finding from this study is that patient delay primarily occurs between primary care and difficulty accessing secondary care. To address this, healthcare providers should establish effective communication channels among patients, families, and medical staff while ensuring easy access to medical resources.^[25] Notably, rural areas experience higher incidences of patient delay, mainly due to the limited medical conditions in rural health centers. To mitigate patient delay, it’s essential to improve healthcare services in rural regions.^[26] This can be achieved through strengthening medical information technology, improving general practitioners’ expertise in recognizing early CKD symptoms, and enhancing the role of pharmacy staff in primary care delivery.^[27] These measures can play a pivotal role in reducing patient delay in rural areas.

4.5. Improving the medical service system

The financial burden related to medical costs, especially for CKD patients requiring maintenance dialysis, adds significant stress.^[28] Expanding reimbursement rates and coverage for chronic diseases could alleviate patient delay. Furthermore, during periods of epidemic prevention and control, medical services should adapt to ensure patients’ basic medical needs. The utilization of online platforms like WeChat and online consultations could provide essential medical services during such special circumstances.

5. Implications

This study’s findings have significant implications for clinical practice, policy development, and future research. Enhanced patient education is crucial to promote timely medical consultation for CKD. Providing comprehensive information about CKD, its progression, and the importance of early medical consultation is vital. Healthcare practitioners should use various channels, such as informational materials, educational sessions, and digital platforms, to raise CKD awareness.^[29] Psychological support and counseling should be integrated into patient care strategies to address the emotional challenges that often accompany chronic diseases like CKD. Offering counseling services, support groups, and sharing patient success stories can foster a more positive attitude toward medical consultation. Strengthening social support networks is essential. Involving family members in the treatment process, encouraging community engagement, and initiating local volunteer programs can reduce feelings of isolation and encourage CKD patients to seek timely medical attention.^[30] Future research can assess the effectiveness of specific interventions in enhancing patient education, psychological support, and social support networks. Long-term studies can evaluate the impact of these interventions on reducing patient delay and improving CKD management.

5.1. Strengths and limitations

This study exhibits notable strengths and some limitations. We strived to enhance its credibility and rigor through a series of carefully considered measures. Specifically, we meticulously selected representative research subjects, extended the duration of observations and interviews to mitigate potential researcher influence, performed thorough data analysis through multiple iterations, and engaged 2 researchers in independent data analysis. The results were collaboratively discussed within the team to establish final themes, thereby reducing bias and augmenting the credibility of the data.

However, several limitations should be acknowledged. Firstly, this study was conducted at 2 specific hospitals in Shanxi Province, which may restrict the generalizability of the findings to other regions or healthcare settings. Secondly, the multistep process of translating interviews from Chinese to English introduces the potential for translation errors and nuances in language. Lastly, the reliance on self-report data may be susceptible to recall bias and subjective reporting.

6. Conclusion

This qualitative study has unveiled critical factors contributing to patient delay among CKD patients. The challenge of patient delay in this context underscores the urgent need to ensure timely access to medical interventions for these individuals. It is imperative for healthcare institutions and society at large to address these influential factors in order to promote early screening, reduce instances of patient delay, and ultimately improve the prognosis for CKD patients.

Acknowledgments

We would like to acknowledge the hard and dedicated work of all the staff that implemented the intervention and evaluation components of the study.

Author contributions

Conceptualization: Jie Zheng, Ao-Han Guo.

Data curation: Rong Liu, Lin-Jun Zhai.

Formal analysis: Bo-Wen Xue, Shu-Yan Wu.

Funding acquisition: Jie Zheng.

Investigation: Rong Liu.

Methodology: Sheng-Ya Feng, Rong Gao.

Resources: Jie Zheng.

Writing – original draft: Ao-Han Guo, Sheng-Ya Feng, Rong Gao.

Writing – review & editing: Jie Zheng, Bo-Wen Xue, Shu-Yan Wu, Rong Liu, Lin-Jun Zhai.