Socio-Ecological Analysis of the Factors Contributing to Delayed Presentation of Patients with Chronic Kidney Disease

Introduction

Chronic kidney disease (CKD) is a progressive condition characterized by the gradual loss of kidney function, leading to end-stage kidney disease (ESKD) if untreated. Globally, CKD represents a significant public health challenge, contributing substantially to morbidity and mortality rates. The Global Burden of Disease Study 2017 reported that CKD was the 12^th leading cause of death worldwide.^1,2 In India, CKD affects 13.8% of the population, with many more at risk due to the high prevalence of diabetes and hypertension, the two leading causes.^3,4 Despite advances in medical care, the late presentation of patients remains a major concern in India, driven by socioeconomic inequities and unequal healthcare access.⁵

This delayed presentation leads to advanced disease at diagnosis, limiting treatment options and increasing complications. Additionally, late presentation is linked to higher healthcare costs, increased mortality rates, and poorer quality of life.⁶ Understanding factors behind delayed presentation is vital for developing interventions that promote early diagnosis and better outcomes.

The Socio-Ecological Model (SEM) provides a framework to understand factors behind delayed CKD presentation, considering how intrapersonal, interpersonal, institutional, and community influences interact to shape health behaviors.⁷ Many rural areas of Andhra Pradesh are known for high CKD prevalence and are considered endemic regions.⁸ Previous studies have identified several factors contributing to delayed healthcare-seeking behavior, including low health literacy, financial constraints, and limited access to healthcare services.⁹ However, these studies often focus on individual factors in isolation, neglecting the complex interplay between various socio-ecological determinants. This mixed-method study examines factors behind delayed CKD presentation in Andhra Pradesh, India, highlighting patient awareness and socio-ecological barriers to timely care.

Materials and Methods

A facility-based convergent parallel mixed methods study was conducted in a tertiary care medical institution in Guntur district, Andhra Pradesh, India, in January and February 2024. The study employed a cross-sectional analytical design for its quantitative component, assessing the disease-specific awareness, whereas the qualitative component involved focused group discussions (FGDs) among CKD patients attending the tertiary care institution.

The study was conducted in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. The study has received ethical approval from the Institute’s ethics committee (AIIMS/MG//IECI2023-24/59). Written informed consent was obtained from each participant before enrolment in the study.

The study participants included newly diagnosed CKD patients or those diagnosed within the past month, attending a tertiary care institution in Andhra Pradesh, India. Patients <18 years old, those with ESKD, or those who had undergone kidney transplantation were excluded. The diagnosis was based on clinical data. Referral cases with a potential CKD diagnosis were considered after confirmation of diagnosis with the required investigations.

A validated 18-item CKD awareness questionnaire was employed to evaluate different CKD-specific awareness domains among the study participants.¹⁰ Items 1-5 assess CKD condition awareness, 6-9 cover medication knowledge, 10-13 address risk factor awareness, 14-15 focus on lab investigations, and 16-18 assess CKD management knowledge. Responses were recorded as “Yes” or “No,” and the questionnaire demonstrated good internal consistency and reliability.¹⁰

For the quantitative study, the sample size was estimated using OpenEpi, Version 3, considering an anticipated awareness about the management of CKD to be 57.9%,¹⁰ an absolute precision of 7%, a 95% confidence interval, and a 5% non-response rate; the final sample size was determined to be 200. Participants were recruited using systematic random sampling. Among the anticipated 1,000 CKD patients expected over the study period, every fifth patient was selected, creating a sampling interval of 5.

In the qualitative part, a pragmatic phenomenological approach was employed to explore the factors associated with delayed presentation. This approach allows researchers to explore lived experiences deeply while keeping a practical, flexible focus on problem-solving. After obtaining written informed consent, 30 patients with delayed presentation from the quantitative study sample were purposefully selected for FGDs. Thematic saturation was considered achieved as the second FGD did not yield any new themes or codes beyond those identified in the first session. Each session was audio-recorded after obtaining consent from the participants and consisted of 15 participants; each lasted for 30 to 45 minutes. The recording was transcribed on the same day and translated into English. The methodology of the study has been represented in Figure 1.

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Figure 1:

Design of a convergent mixed method study.

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Operational definition: Delayed presentation of CKD was defined as presentation at G4 (eGFR 15-30 mL/min) or G5 (eGFR< 15 mL/min) as per KDIGO guidelines 2024.¹¹

Results

The socio-demographic profile of the participants has been given in Table 1.¹³ Of 200 participants, 116 (58%) presented with delays (95% CI: 51-54.6%). Table 2 compares CKD awareness between participants with and without delayed presentation. Those with delayed presentation were less aware of their disease prognosis (46.6% vs. 28.6%, p=0.01), medication names and usage (37.1% vs. 53.6%, p=0.02), and primary medication roles (43.1% vs. 59.5%, p=0.02). They also had lower knowledge of foods to avoid (44.8% vs. 59.5%, p=0.04), appropriate exercises (41.7% vs. 57.1%, p=0.03), necessary lab tests (43.1% vs. 60.7%, p=0.01), and interpretation of test results (26.7% vs. 47.6%, p=0.002).

Qualitative results

The FGDs included CKD patients with delayed presentation. There were an equal number of female and male participants, with the nearly 2/3 being > 60 years.

Theme: Individual factors

Subtheme: Awareness and Perception

Many participants reported limited knowledge about CKD symptoms, often mistaking them for normal physiological signs or unrelated health issues.

Q1: “If we know the symptoms are kidney problems, we will go to the hospital; due to lack of awareness, we are like tℎis”.

Q2: “I do not know. The symptoms are related to the kidney. I was having shortness of breath; I went for a consultation for a heart problem. Then they told me I did have a kidney disease. I do not have any difficulty till then related to kidney”.

Subtheme: Neglect of health

Many participants recognized that their doctors were advising them to attend follow-up appointments, but they admitted to not following this advice.

Q3: “Most doctors write the patients to go for regular follow-up, and lack of regular follow-up can also be a reason. Once symptoms decrease many people think there is no need to go to doctor and stop the medicines.”

Q4. “The hospital is too far from my home, and every visit means losing a day’s wage along with paying hospital bills. And when I don’t have any symptoms, I feel like there’s no need to take treatment or go for follow-up.”

Non-adherence to prescribed medications was common among participants, leading to suboptimal disease management and delayed diagnosis.

Q5: When I started feeling better, I assumed I didn’t need the tablets anymore. Travelling to the hospital also costs me a day’s wages, so I stopped going.”

Theme: Interpersonal factors

Sub-theme: Inadequate family assistance and financial constraints

Many participants lacked sufficient support from family members in recognizing and addressing CKD symptoms, leading to delays in seeking medical attention.

Q6: “Financial constraints play a significant role, particularly among elderly individuals who do not receive adequate care or support from their children.”

Q7: “I live alone, and I cannot come through all along to the hospital. Once I go to the small hospital, they ask me to go to the big one, but I will not. Somehow, we need to die someday. Why move here and there?”

Sub-theme: Neighbors’ suggestion

Some participants expressed beliefs in alternative treatment modalities, relying on herbal remedies or unconventional therapies, and questioning conventional medical care for CKD symptoms.

Q8.”When my health started getting worse, we decided to try Ayurveda after our neighbors strongly recommended it. They said the condition would improve within three days.”

The decision to explore alternative systems of medicine may have been influenced by trust in the neighbor’s personal experience and a growing dissatisfaction with conventional care, which was perceived as invasive and costly.

Theme: Institutional factors

Sub-theme: Healthcare access and infrastructure

Participants’ interactions with primary healthcare providers and pharmacists influenced their journey toward CKD diagnosis.

Q9: “When symptoms start, we usually go to the local clinic and get some tablets. But they don’t check properly or explain much. Going to a big hospital means losing a day’s wage. So we avoid going unless it gets really serious.”

Sub-theme: Physician-related

Miscommunication and inadequate patient-provider dialogue were cited as barriers to timely CKD diagnosis, leading to misunderstandings and delays in appropriate management.

Q10: “Nowadays, doctors do not explain the patient’s condition. They prescribe medications, and the attendant gives instructions on when to take them, without explaining why the disease occurred, what precautions to take, or what to eat.”

Q11: The doctors did not specify the duration for taking the medications. We kept returning for follow-ups and were repeatedly prescribed the same medicines, but without knowing how long to continue, we started questioning the need for follow-ups.

Theme: Societal factors

Sub-theme: Beliefs in alternative treatment modalities

Some participants expressed beliefs in alternative treatment modalities, relying on herbal remedies or unconventional therapies, and questioning conventional medical care for CKD symptoms.

Q12: “Many non-allopathic practitioners claim they can cure kidney problems without dialysis or a transplant. Why don’t allopathic doctors give that kind of reassurance?”

Q13: “The Ayurvedic doctors tell us it’s okay to take both their medicines and allopathic ones together. But allopathic doctors don’t say anything like that — they don’t guide us on whether we can combine treatments or not.”

Table 3 provides a side-by-side presentation of the quantitative and qualitative results, highlighting their convergence. A diagrammatic summary of the SEM of delayed presentation of CKD patients has been shown in Figure 2.

Table 3: Joint display for the convergent mixed method analysis for qualitative and quantitative components (n=116)

Qualitative phase			Quantitative study phase
Discussion topics at FGD	Identified themes	Specific phrases at FGDs for each theme	% score in each category
Constructs of the Socio-ecological model	Individual factors	Lack of awareness about CKD care (Q1, Q2), non-adherence to medicines and follow-up (Q4), Neglected the referral (Q3, Q5)	60% did not know the symptoms when CKD gets worse, 11.2% were non-adherent to follow-up care 22.4% neglected the referral
	Interpersonal factors	Lack of family assistance (Q7), financial barriers (Q6)	6.9% of the participants did not seek care due to financial reasons
	Institutional factors	Problems related to healthcare accessibility (Q9) and perceived physician neglect (Q10, Q11)	4.3% had delayed presentation due to improper communication with the physician
	Societal factors	Beliefs in alternative systems of medicine (Q12, Q13)	3% depended on alternative systems of medicine like Ayurveda

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Figure 2:

Socio-ecological model for factors of delayed CKD presentation to a tertiary healthcare institution.

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Discussion

Our study highlights a significant lack of awareness of various dimensions of CKD among patients regarding their condition, which is a crucial barrier to early diagnosis and treatment. This finding is consistent with previous studies that have identified poor CKD awareness as a critical factor in delayed presentation.^14,15 Most CKD patients were unaware of their disease until it reached an advanced stage, similar to the participants in our study who mistook CKD symptoms for other health issues.¹⁶ This lack of knowledge and awareness is more common in rural communities, where the issue is further exacerbated by various health system-related factors.¹⁷

Many participants reported neglecting their health by stopping medications or missing follow-ups, which worsened CKD progression. This behavior has been well-documented in the literature, where non-adherence to treatment and poor self-management are associated with worse CKD outcomes.¹⁸ Another study found that patients who failed to adhere to dietary and medication regimens were more likely to experience rapid disease progression and delayed referral to nephrologists.¹⁹

Our study found that limited family support in recognizing and managing CKD symptoms contributed to delayed healthcare seeking. This aligns with studies from other low- and middle-income countries, where socioeconomic factors often limit family support.^20,21

Some participants with a family history of CKD or comorbidities reported that these factors influenced their understanding of the disease and health-seeking behavior. The participants relied on neighbors’ suggestions and alternative treatment modalities instead of seeking appropriate medical care. Traditional and alternative medicine are often preferred over allopathic care, particularly in rural areas.^22,23 Although only 3% reported using alternative medicine in the survey, qualitative findings showed some initially tried it before switching to allopathic care, explaining the low survey percentage since most eventually sought conventional treatment.

Participants reported difficulties in accessing specialized care and expressed dissatisfaction with the communication and guidance provided by healthcare providers. Limited access to nephrology services and poor communication between patients and healthcare providers were major factors contributing to the late presentation of CKD patients in India.²⁴ Additionally, inadequate patient-provider communication led to misunderstandings about the severity of the disease and the importance of timely referral to specialists.²⁵ In Andhra Pradesh, the launch of Rajiv Aarogyasri in 2007 significantly transformed access to care for ESKD patients by providing free hemodialysis services in government hospitals. The state has made notable progress in improving kidney disease care.²⁶ Despite this, several rural regions, such as the Uddanam area in Srikakulam district, have recently reported a high prevalence of chronic kidney disease of unknown etiology (CKDu).²⁷ State initiatives like the STOP-CKDu campaign, RO Water provision, and new kidney care centers aim to improve early detection and access, but disparities remain, highlighting the critical need to contextualize health-seeking delays within AP’s specific healthcare landscape.^26,28

Our study showed that cultural beliefs led participants to trust alternative treatments and doubt conventional care, aligning with research linking these factors to delayed diagnosis and treatment.²⁹ Although such beliefs are common in rural India, some urban participants in our study also used herbal or traditional remedies influenced by neighbors or social media, delaying proper medical care.³⁰

Individual factors like health literacy, personal beliefs, and self-management are closely linked to societal and institutional influences. Limited understanding of CKD may arise from both lack of education and cultural norms that discourage proactive care or favor alternative medicine. This gap is worsened when healthcare institutions provide unclear, inaccessible, or unsupportive communication. Difficult-to-reach or poorly coordinated services can further delay care, even among motivated individuals. Long wait times, limited specialist access, and confusing medical advice illustrate how broader social and systemic factors shape and constrain individual health behavior.

Our study has several strengths. It examined delayed presentation using a SEM and mixed methods, offering insights beyond standard quantitative research and highlighting implications for public health interventions, including targeted awareness and improved healthcare access. Limitations include limited generalizability due to the focus on Andhra Pradesh, reliance on self-reported data, and a cross-sectional design preventing causal inference. The lack of disaggregated qualitative analysis across socio-economic strata limits understanding of variations in health-seeking behavior. Quantitative data on family history, comorbidities, gender, family support, and healthcare accessibility were not collected, though qualitative findings suggest these factors influence awareness and delays in seeking care.

In conclusion, this study highlights the socio-ecological factors behind delayed CKD presentation. Promoting early care requires awareness campaigns, family and Accredited Social Health Activist-led community engagement, Primary Health Centre-based screening with tele-nephrology, and physician training. Dialysis centers should be made more affordable and accessible, especially in high prevalence regions.