Quality of life and perceived care of patients in advanced chronic kidney disease consultations: a cross-sectional descriptive study

Abstract

Objetive

In the care of renal patients, prioritising their quality of life and nursing care is essential. Research links patients' perceptions of care quality to improved outcomes such as safety, clinical efficacy, treatment adherence, and preventive practices.

This study aimed to evaluate the quality of life and care perception in these patients and explore potential associations between these dimensions.

Material and methods

A cross-sectional descriptive study was conducted with 43 patients attending an advanced CKD clinic. Quality of life was assessed using the KDQOL-36 questionnaire, while the IECPAX questionnaire measured perceived care quality. Sociodemographic and clinical data were collected from patient records. Participants completed the questionnaires during routine visits, with scores analysed to identify associations between variables.

Results

The study included 60% men (n = 28) and 32% women (n = 15), with a mean age of 78 years (±16). Among participants, 45% were diabetic, 79% hypertensive, and 58% took more than five medications daily. Mean scores were 78.76 (±12.15) for KDQOL-36 and 5.54 (±2.64) for IECPAX. Significant differences were found in the physical role domain between men and women (p = 0.01) and for individuals over 65 years (p = 0.04). Higher IECPAX scores were associated with taking more than five medications (p = 0.05). However, no correlation was observed between KDQOL-36 and IECPAX scores.

Conclusions

The findings suggest that quality of life and perceived care quality are independent in advanced CKD patients. While this study provides insights, larger multicentre studies are needed to validate these results. These findings highlight the importance of addressing both aspects separately to improve outcomes in this population.

Resumen

Objetivo

Evaluar la calidad de vida y la percepción de la atención recibida en personas atendidas en consultas de enfermedad renal crónica avanzada.

Material y métodos

Se realizó un estudio transversal descriptivo que incluyó a 43 pacientes con ERCA. La calidad de vida relacionada con la salud se valoró mediante el cuestionario KDQOL-36 y la percepción de la atención a través del cuestionario IECPAX. Además, se recopilaron variables sociodemográficas y clínicas a partir de las historias médicas. Los cuestionarios fueron administrados durante las visitas habituales y los resultados se examinaron para detectar posibles asociaciones entre las variables.

Resultados

De la muestra, un 60 % eran hombres (n = 28) y un 32 % mujeres (n = 15), con una edad media de 78 años (±16). El 45 % presentaba diabetes, el 79 % hipertensión arterial y el 58 % polimedicación superior a cinco fármacos diarios. Las puntuaciones medias alcanzaron 78,76 (±12,15) en el KDQOL-36 y 5,54 (±2,64) en el IECPAX. Se observaron diferencias significativas en el rol físico según sexo (p = 0,01) y en el grupo mayor de 65 años (p = 0,04). Asimismo, una mejor percepción de la atención (IECPAX) se relacionó con el uso de más de cinco medicamentos (p = 0,05). No se halló correlación significativa entre las puntuaciones de ambos cuestionarios.

Conclusiones

Los resultados evidencian que la calidad de vida y la percepción de la atención constituyen dimensiones independientes en pacientes con ERCA avanzada. Esto subraya la necesidad de abordarlas de forma diferenciada para optimizar la atención y los resultados en salud.

What is known?

• •

  Advanced chronic kidney disease (ACKD) significantly impacts quality of life due to comorbidities, age, and polypharmacy. Perceptions of care affect adherence, quality, and safety, but few studies have examined the relationship between these dimensions.

What it contributes?

• •

  This study shows that quality of life and perceived care are independent. It finds that older adults and women score lower in the physical domains, while polypharmacy improves perceived care.

Introduction

Quality of life and person-centred care are concepts defined by the World Health Organisation. Quality of life is understood as an individual's subjective perception of their life situation within a cultural context and in relation to their personal expectations and values. Person-cantered care, on the other hand, considers the person holistically, addressing their individual needs arising from the determinants of health.¹

Medical advances have increased longevity, leading to a rise in the prevalence of chronic diseases. In this context, quality of life and integrated care have become increasingly important components in evaluating health outcomes, beyond conventional clinical criteria.²

ACKD represents the final stage of kidney disease, defined by a glomerular filtration rate (GFR) of less than 15 ml/min, resulting from structural or functional kidney damage.³ These patients are in the phase prior to the need for renal replacement therapy (RRT), and their quality of life is most significantly affected.³

Medical advances have increased longevity, leading to a rise in the prevalence of chronic diseases. Chronic kidney disease (CKD), in addition to being more prevalent with age, often coexists with other diseases and complications that negatively affect the patient's social, family, and work life, significantly impacting their quality of life.³

It has been shown that an appropriate approach to quality of life, together with comprehensive care from multidisciplinary teams, can improve the patient's ability to cope with the disease at this stage.⁴

The patient experience has also been positively linked to aspects such as safety, clinical effectiveness, treatment adherence, and participation in preventive care, which are also essential elements in the management of kidney patients.⁴

Given this evidence, a study evaluating the quality of life and the perception of care received by patients seen in the CKD clinic is justified, in order to identify the factors that influence both dimensions.

Material and methods

A cross-sectional descriptive study was conducted between January and July 2023 at a tertiary hospital to obtain an accurate picture of the status of patients with advanced chronic kidney disease (CKD) during that period. A convenience sample was used, and patients over 18 years of age diagnosed with stage V ACKD (GFR <15 ml/min, precursor to RRT), followed in specialised clinics and not yet initiated renal replacement therapy, were included. All participants provided written informed consent. Patients in earlier stages or who initiated renal replacement therapy during the study were excluded. Two self-administered questionnaires were used:

• 1

  KDQOL-36⁵: Spanish version with 36 items to assess health-related quality of life (HRQoL) (scores from 0 to 100).

• 2

  IECPAX⁶: developed in Spain, it evaluates the experience of chronic patients in their interaction with the healthcare system. Nurse support was permitted for patients with reading or comprehension difficulties.

During routine consultations, patients completed the questionnaires after receiving information about the study and signing the informed consent form. Clinical and sociodemographic data were also collected from medical records, including comorbidities such as hypertension and diabetes.

The data were analysed using SPSS® version 26.0. Quantitative variables were described using measures of central tendency and dispersion; qualitative variables, using percentages. Tests such as Student's t-test, chi-square test, ANOVA, and Mann-Whitney U test were applied, depending on the data distribution, considering associations with p < .05 to be statistically significant.

The study was approved by the relevant ethics committee (CI: 23/038-E) and complied with the Declaration of Helsinki and Good Clinical Practice guidelines. Confidentiality and anonymity were guaranteed, and participation was voluntary.

Results

A total of 43 patients who adequately completed the questionnaires were included. 60% (n = 28) were male and 32% (n = 15) were female, with a mean age of 78 years (±16). 45% (n = 21) were diabetic and 79% (n = 37) were hypertensive. A total of 58% (n = 25) reported taking more than 5 medications per day. The mean scores obtained on both questionnaires were 78.76 (±12.15) on the KDQOL-365 and 5.54 (±2.64) on the

IECPAX.⁶

This study included 43 patients with chronic kidney disease (CKD), and their scores on the HRQoL (KDQOL-36⁵ and patient experience (IEXPAC⁶ questionnaires were analysed, considering variables such as sex, age, and comorbidities.

Hypertension was the only clinical factor that showed a significant difference in quality of life: patients without hypertension reported better quality of life. Other factors such as sex, age, diabetes, cardiovascular disease, and number of medications did not show relevant associations.

In the KDQOL-36⁵ questionnaire, no significant differences were found between men and women, except in the "Emotional Role" dimension, where women showed better scores than men (p = .03), suggesting greater emotional resilience in women in this population. Regarding age, a significant difference was observed only in the vitality dimension, with higher levels in those under 65 years of age (Table 1).

Table 1.

Impact of age and sex of patients seen in the advanced chronic disease clinic on the score obtained in the different dimensions of the quality-of-life questionnaire (KDQOL-36).

KDQOL -36 items Questionnaire
	Sex		p-value	Age		p-value
	Man n = 28	Woman n = 15		>65 years	<65 years
	Mean, standard deviation			Mean, standard deviation
Physical dimension (10 items)	20,7 (5,3)	21,1 (2,9)	.79	20,6 (5)	22 (1,2)	.46
Physical role (4 items)	13,3 (4,6)	12,8 (1,7)	.71	13,3 (4,1)	12,1 (1,2)	.45
Body pain (2 items)	6,5 (2,8)	5,3 (2,2)	.16	6,3 (2,8)	5,1 (2)	.30
General health (5 items)	9,6 (4,1)	11,3 (4)	.19	9,8 (3,9)	12,1 (5,1)	.18
Vitality (4 items)	8,4 (3,2)	9,9 (3,9)	.18	8,4 (3)	11,3 (4,8)	.04
Social function (2 items)	1,46 (1,0)	1,7 (1,1)	.55	1,4 (.9)	2,1 (1,6)	.09
Emotional role (3 items)	5,4 (2,7)	7,4 (2,9)	.03	5,8 (2,7)	7,4 (3,8)	.18
Mental health (5 items)	9,54 (4,7)	11,2 (4,7)	.26	9,9 (4,4)	11,6 (6,3)	.51

In the IEXPAC6 questionnaire, differences were found by sex, with males reporting a better perception of care, especially in the "new relational model" dimension. In contrast, no significant differences were detected according to age, hypertension, diabetes, cardiovascular disease, or number of medications (Table 2).

Table 2.

Impact of patient sex and age on the score obtained in the different dimensions of the Perceived Care Questionnaire in the Advanced Chronic Kidney Disease Nursing Consultation (IEXPAC).

IEXPAC questionnaire items
	Sex		p-value	Age		p-value
	Man n = 28	Woman n = 15		>65 years	<65 year
	Mean, standard deviation			[x5−6]Mean, standard deviation
Productive interactions (1, 2, 5 and 9)	7,6 (3,7)	8,1 (2,9)	.68	7,8 (3,1)	7,1 (4,9)	.61
New relational model (3, 7 and 11)	5,6 (3,4)	3,3 (2,8)	.03	4,8 (3,3)	5,0 (3,8)	.86
Patient self-management (4, 6, 8 and 10)	7,2 (3,6)	7,4 (2,7)	.83	7,4 (3,1)	6,7 (4,6)	.59

Finally, no significant correlation was found between the overall scores of the KDQOL-36⁵ and IEXPAC⁶ (p = .46).

Discussion

Studies on HRQoL in patients with ACKD have historically focused on the effects of renal replacement therapy (RRT). Most research indicates a greater decline in HRQoL in patients on haemodialysis or peritoneal dialysis compared to those in pre-dialysis phases. Furthermore, there is a strong association between symptoms of anxiety and depression, and a poorer perception of quality of life in this population.²

In our sample, hypertension—present in 79% of patients—was the only comorbidity significantly associated with a poorer quality of life, making it a priority modifiable factor. This observation aligns with the most recent clinical guidelines, including the KDIGO update, which emphasize the importance of rigorous blood pressure control to preserve renal function and reduce symptom burden.⁴ Therefore, strengthening the comprehensive management of hypertension could be essential to improving health perception.

The higher scores among women in the "Emotional Role" dimension (p = .03), as well as the higher levels of vitality in subjects under 65 years of age, reflect patterns observed in recent reviews on ACKD, which indicate greater emotional resilience in women and better functional status in younger individuals.⁷ This reinforces the idea of ​​incorporating individualised psycho-emotional strategies, such as emotional support programs tailored to gender and age, to improve relational aspects.

Regarding the perception of care assessed with the IEXPAC,⁶ men scored higher in the "new relational model," coinciding with the findings described by Hughes et al., who attribute these differences to communication factors and differing expectations between genders.⁸

The mean IEXPAC⁶ scores were lower than those reported in ACKD patients by Fernández-Díaz et al. (6. 68), although similar to those for other chronic diseases, which could be due to sociodemographic factors such as advanced age. In contrast, the items related to self-management were well-rated, possibly due to the ongoing follow-up by the same nurse, which fostered the therapeutic relationship and patient empowerment.⁹

The lack of correlation between the KDQOL-36⁵ and IEXPAC⁶ in our sample (p = .46) emphasizes that quality of life and care experience do not clinically overlap. Therefore, it is recommended that both tools be integrated into routine clinical practice as complementary instruments, allowing for more comprehensive monitoring of the impact of the disease and the care received. This dual assessment is particularly relevant in highly complex contexts, such as chronic kidney disease (CKD), where the biopsychosocial approach requires a holistic and personalised perspective.

Finally, in their study, Zhang Y et al. provide data showing that improved HRQoL is associated with lower mortality and hospitalisations in dialysis patients.¹⁰ Although our cohort is pre-dialysis, this finding underscores that improving HRQoL from early stages could translate into better clinical outcomes in the medium term. This evidence justifies integrating standardised assessments (KDQOL-36, IEXPAC) into clinical practice as relevant indicators, not only for patient well-being but also to anticipate adverse events.

Limitations

The main methodological limitation of the study was the sample size, which was limited by patient availability during the inclusion period. Although an attempt was made to include the entire population seen in the CKD clinic, with stage V ACKD, the results should be interpreted with caution. A multicentre or longer-term study would be necessary to increase statistical power and improve the external validity of the findings.

Conclusions

This study provides a comprehensive assessment of quality of life and perceptions of care received in ACKD patients in the pre-dialysis phase. The results show that quality of life is significantly influenced by clinical factors such as hypertension, while the perceived care experience differs according to sex, especially in relational and communication dimensions.

The lack of correlation between these two dimensions confirms that quality of life and care experience are independent constructs, reinforcing the need for their systematic evaluation in clinical practice. Furthermore, the high scores on self-management items highlight the value of ongoing follow-up by nursing professionals as a key element in promoting self-care and patient empowerment.