Relationship between health literacy and quality of life among hemodialysis patients,Tehran,Iran,2019

Abstract

BACKGROUND:

Chronic kidney disease and dialysis are associated with various complications.

OBJECTIVE:

This study aimed to determine the relationship between health literacy and quality of life among patients receiving hemodialysis in hospitals affiliated with Tehran University of Medical Sciences.

METHODS:

In this study, a descriptive – correlational study design with 138 sample size was used. Convenience sampling was used to select the study participants. We collected the data on May-September 2019. Data collection was done using the HELIA and KDQOL SF™.

RESULTS:

In this study, 133 respondents fully completed the questioners. The mean score of health literacy of the respondents was 49.03 ( $\pm$ 22.37) while the average score of quality of life of the respondents in this study was 53.01 ( $\pm$ 14.86).

CONCLUSION:

Based on the findings, patients receiving haemodialysis had insufficient health literacy and a better quality of life. In order to address the health literacy needs of the patients, consideration of continuous health education and assessment in this patient subpopulation could gradually improve their health literacy and quality of life. Health care providers such as nurses could improve Health Literacy and substantially Quality of Life through interventions aimed at determining existing literacy needs in the long and short term treatment course for individual dialysis patients.

Keywords

Chronic kidney disease health literacy quality of life hemodialysis health-related quality of life

1. Introduction

The prevalence of chronic renal failure is approximately 242 cases per one million populations, and the rate increases annually by 8% [1, 2, 3]. The death and mortality rate is projected to rise to 11.5 million annual deaths and a 14% per 100,000 population mortality rate by 2030 [4]. The most commonly used renal replacement therapy (RRT) throughout the world for the terminal phase of chronic kidney disease (CKD) is hemodialysis [5]. These modalities are aimed at performing the function of the impaired kidney, alleviating impairment in other body systems and improving for the quality of life (QOL) of patients [6]. Of course these patients undertaking hemodialysis experience various consequences, such as nausea and hypotension, headache, cramp, fever, chest pain, hypoglycemia, urticarial and kidney disease-mineral and bone disorder (CKD-MBD) [7, 8]. These complications can be experienced during intradialytic sessions [7].

So, these patients have to deal with both aspects of the disease and limitations that entail dialysis as a treatment modality. These include CKD symptoms, diet controlling, coping with body changes, altered activities of daily living (ADLs) and economic burdens. Such a situation requires vigilance of management; moreover, it calls for substantial health literacy (HL) and affects the QOL of these patients.

Effective management modalities for patients receiving hemodialysis calls sufficient health literacy (HL). HL is related to literacy and requires individual’s awareness and ability to access, understand and apply health information and decisions in their everyday life for disease prevention, health promotion, and improvement optimal health care services [9, 10]. Based on the tremendous symptom burden, numerous co-morbidities and lifestyle changes, patients receiving hemodialysis have varying health literacy needs [5, 11]. These include information on the treatment modality, lifestyle modifications, treatment centers, resources and their schedules for receiving hemodialysis at their respective centers. Also, information regarding sites blood for hemodialysis is obtained included; grafts, catheters and fistulas is the prevention of paramount site infection and maintaining patency of sites [12]. Based on preliminary observation, it can be concluded that quality of life and HL among patients receiving hemodialysis are two elements that are crucial for patients [13]. Oren and Enc (2013), highlighted that the evidence on the relationship to QOL might help health care providers such as nurses in improving their care plans. Moreover, the level of HL helps to enhance disease management and thus, QoL among HD patients [14]. It is also worth noting that understanding of CKD and its management is crucial to patients’ active participation in their care, in so doing, their QOL and HL are enhanced [15, 16]. Nevertheless, to our knowledge, studies assessing the correlation of health literacy and quality of life in this patient subpopulation is lacking. The purpose of this study was to assess the relationship between health literacy and quality of life among patients receiving hemodialysis at Tehran University of Medical Sciences affiliated hospitals, Iran, 2019.

2. Methods

2.1 Study design

The study was conducted using a descriptive cross-sectional correlational study design to assess health literacy and quality of life among hemodialysis patients at Tehran University of Medical Sciences affiliated hospitals in Iran, Tehran.

2.2 Research setting

The study was carried out in hospitals with functional dialysis centers among Tehran University of Medical Sciences affiliated hospitals in Tehran, Iran.

2.3 Population

All participants were receiving hemodialysis at Tehran University of Medical Sciences affiliated hospitals, Iran, 2019.

2.4 Inclusion criteria

Patients above 18 years of age, those who informed consent for participation in the study, patients who have received hemodialysis for at least three months and have reading and writing skills, having no acute problems of vision and hearing were included in the study.

2.5 Sampling

Convenience sampling method was utilized to select the study participants. Every patient receiving hemodialysis at the selected setting was eligible to participate in the study. The list of the participants was obtained from the administration of the dialysis center. This was used as the sampling frame. Convenience sampling method was chosen because it provided a representative sample while maintaining a statistically meaningful measure of precision.

2.6 Data collection

Data were collected in May-September 2019. After signing the written informed consent form by volunteer participants, a self-administered questionnaire was used to collect data from eligible study participants. The questionnaires were distributed to the participants at the hospital during clinic days.

2.7 Instruments

Three instruments were used in this study.

III. I.
A socio-demographic tool: was used to collect data on the socio-demographic characteristics of the participants. These characteristics included: age, gender, BMI, employments status, household income, Family number, history of CKD and duration hemodialysis, educational level, economic status, residence, history of addiction, vascular access, history of water pipe and water pipe duration.
II.
Health Literacy for Iranian Adults (HELIA): This was assessed using the Health Literacy for Iranian Adults (HELIA) Inventor. The findings suggest that Health Literacy for Iranian Adults (HELIA) is a reliable and valid instrument for measuring HL in Iran [17, 18]. It has been demonstrated to have notable reliability coefficients (Cronbach’s alpha) of 072 to 0.98 across studies. The shorter version of the HELIA tool is a 33-item tool. The tool assesses HL in aspects of availability, reading skills, understanding, assessment, decision making, and using health information. The HELIA scores range from $<$ 50 means insufficient literacy, 50.1 to 66, not enough HL, 66.1 to 84 adequate HL, while more than 84.1 is considered excellent or sufficient [1, 17].
III.
Kidney Disease, and Quality of Life (KDQOL-SF™) were used to assess QOL. KDQOL-SF™ has been shown in various studies to be a valid tool for the assessment of QOL in chronic HD patients. It has also been translated into Farsi using Iranian patients. The Iranian version of the KDQOL-SF™ questionnaire is both highly reliable and valid for use with Iranian patients in HD (Cronbach alpha 0.71–0.93) [19]. It has been demonstrated to have reliability coefficients (Cronbach’s alpha) of more than 0.80 across studies across countries [19, 20]. It is a 24 item tool developed for individuals with kidney disease and on dialysis. The disease targeted components comprised: symptoms (12 items), effects of kidney disease (eight items), burden of kidney disease (four items), cognitive function (three items), quality of social interaction (three items), sexual function (two items), sleep (four items), dialysis staff encouragement (two items) and patient’s satisfaction (one item). Higher scores reflect a higher QoL. The scores range from 0 to 100, such that the lowest and highest possible value are 0 and 100 respectively. The score represents the percentage of the total possible score achieved out of the items of the KDQOL-SF™ tool [21].

2.8 Data analysis

Data were analyzed with SPSS Version 16. Descriptive statistics were presented using frequency tables. The results were described with mean $\pm$ standard deviation (SD). The level of HL was determined as; $<$ 50 indicates insufficient literacy, 50.1 to 66, not enough HL, 66.1 to 84 adequate HL, while more than 84.1 is considered excellent or sufficient [1, 17].

QOL was also determined in such a way that; the lower the score, the more disability. The higher the score; the less disability, i.e., a score of zero is equivalent to maximum disability and a score of 100 is equivalent to no disability Pearson product-moment correlation analysis was done to examine the relationship between the mean scores of HL and QOL. The normality and extreme outliers were checked before the correlation analysis. The probability of significant ( $p$ -value) $<$ 0.05 was considered statistically significant. In our study, we utilized frequency, means, standard deviation, and Pearson correlation.

2.9 Ethical consideration

Before starting data collection and preliminary study, ethical clearance was obtained from the ethics committee of the School of Nursing and Midwifery and Rehabilitation, Tehran University of Medical Sciences, Tehran, Iran (IR.TUMS.FNM.REC.1398.015). Verbal and written informed consent to the study participants was sought before conducting the data collection. Study participants were informed about confidentiality, the risk and benefits, the purpose of the study, accountability and academic honesty was at all explained to the participants and maintained throughout the study. In addition to these, participants were informed that they have the full right to refuse or discontinue participating in the study.

3. Results

The mean $\pm$ SD age of the participants was 49.13 $\pm$ 16.8, while the mean number of people living with the respondents was 2.7 $\pm$ 2 and the average duration of suffering CKD was 4.72 years. Majority of the participants were aged between 35 to 60 years (49.6%) (Table 1). The mean dialysis adequacy (KT/V) was 1.4 $\pm$ 0.52.

Table 1
Demographic information of patients undergoing hemodialysis

Variable		$N$ (%)
Gender	Male	61	(49.5)
	Female	70	(52.6)
Marital status	Single	33	(25)
	Married	67	(50.8)
	Divorce	17	(12.9)
	Widowed	15	(11.5)
Educational status	Primary	31	(23.8)
	High school	23	(17.3)
	Diploma	27	(20.3)
	Under graduate	37	(28)
	Post graduate	14	(10.6)
	Governmental	30	(22.7)
Employment	NGO	13	(9.8)
	Retired	20	(15.3)
	Simple worker	17	(12.9)
	House keeping	40	(30.3)
	No work	12	(9.1)
Income	Adequate	63	(48.1)
	Fairly adequate	52	(39.7)
	Insufficient	16	(12.2)
HD vascular access	Catheter	47	(37.3)
	AV fistula	72	(57.1)
	Graft	14	(5.6)
Laboratory profile	Urea	70	(37)
	Creatinine	5.3	(2.7)
	Hemoglobin	11.2	(2.0)
	Albumin	4.6	(1.2)
	Calcium	7.3	(1.4)
	Phosphor	4.6	(1.6)

The mean score of HL of the respondents was 49.03 $\pm$ 22.37 (Table 2). Most respondents had insufficient health literacy (54.9%) followed by those who had “not enough” HL (22.6%), while least number of respondents reported that had adequate and excellent HL (15.8% and 6.8% respectively). The mean score of quality of life of the respondents in this study was 53.01 $\pm$ 14.86. Also, more than half of the respondents had good QOL (54.9%), while a notable number of respondents had reduced QOL. Patients had notably good average scores (that is above 50 on a scale of 0–100) on different aspects of quality of life (Table 3). There was a significant relationship between HL and QOL ( $p<$ 0.01) (Table 4). QOL also increases (positive Pearson correlation) however this relationship was not very strong ( $r=$ 0.438).

Table 2

Categorical frequency distribution of health literacy scores

Variable	Levels	Frequency	Percentage
[l]Healthliteracy	Insufficient HL (0–50)	73	54.9
[l]Healthliteracy	Not enough HL (50.1–66)	30	22.6
	Adequate HL (66.1–84)	21	15.8
	Excellent HL (84.1–100)	9	6.8
Total	Range 0–100	133	100
Mean $\pm$ SD	49.03 $\pm$ 22.37

Table 3

Characteristics of the dimensions of the KDQOL-SF questionnaire (0–100)

Variables		Mean	SD
Symptom/problems		55.48	24.02
Effects of kidney disease on daily life		52.74	22.71
Burden of kidney disease		48.30	23.02
Work status		47.69	38.81
Cognitive function		55.47	13.00
Quality of social interaction		59.52	27.00
Sexual function		43.18	49.72
Sleep		44.71	10.47
Quality of life scales	Overall health rating	53.30	21.47
Quality of life scales	Dialysis staff encouragement	50.93	31.14
	Patient satisfaction	52.76	25.14
Physical and mental health	Physical functioning	53.13	32.83
Physical and mental health	Role limitations caused by physical health problems	44.10	43.28
	Role limitation caused by emotional health problems	41.85	45.25
	Social functioning	57.33	24.57
	Emotional well being	54.81	15.78
	Pain	52.87	23.00
	Energy/fatigue	48.85	23.58
	General health perceptions	46.78	12.93
	Overall health rating	36.84	20.08

Table 4

Association of HL groups and QOL groups

QOLHL	[c]Reduced
QOL	[c]Better
QOL	[c]Pearson
Chi-square
Insufficient/not enough	54	49	$p<$ 0.01
Adequate/excellent	6	24
Total	60	73

4. Discussion

The results of this study showed that the HL of the majority of the participants is insufficient. For this reason, the necessary steps should be considered to improve the HL of patients receiving haemodialysis. This finding is consistent with previous studies that have conducted in Iran. Dadipoor [1]; Bahadori’s study [18] found that the participants had insufficient HL with mean scores less than 50% out of a scale of 0 to 100 using the same tool (that is, HELIA) [1, 18]. Elsewhere, Martins et al., (2016) in their findings, they also revealed that most patients receiving hemodialysis had inadequate HL. Our findings point to the need for improvement of HL as a seminal pivot for improving QOL among patients receiving hemodialysis. This could be a useful domain that can be utilized to reduce mortality and morbidity. HL is a substantial approach for involving individuals in self-care and health improvement activities [1]. Conclusively, interventions aimed at increasing awareness, providing and addressing more attention on HL, community awareness via health promotion program and activities, Medias effectively to use resources, improving client and physician’s relationship are called for based on the above findings [22]. Others such as improving the communication skills of providers are vital to improving the HL of patients receiving dialysis therapy, state of health education and effective use of resources as well [23, 24].

With regards to the QoL, the result of this study identified that more than half of the respondents had better QOL, yet, a notable number of respondents had reduced QOL. This finding could be partly attributed to the fact that HD has a therapeutic benefit and improves on both survival and QOL of patients experiencing CKD [25].

This study also identified that the mean score on the various aspects of QOL (that is, general health perception, overall health rating, physical functioning, role limitations by emotional and physical health problems, social functioning, emotional wellbeing, energy, fatigue, and physical and mental aspects) was notably good. These findings are entirely consistent with a study conducted by Gerasimoula et al. [26] in Greece, which noted that participants receiving hemodialysis experienced the moderate QOL. In the contrary, the study conducted by Joshi et al. (2017) and Heidarzadeh [25] found that patients receiving hemodialysis had an overall low QOL. Comparatively, a study conducted in Iran by Heidarzadeh [25], 34% of patients receiving hemodialysis had desirable QOL. This is quite lower than what we found in our study. Thus, it seems that the QOL differs across settings in Iran. Nevertheless, we wish to recommend that health care providers need to consider various characteristics of patients while reinforcing QOL among patients receiving hemodialysis. This study identified that among the different dimensions of QOL such as pain, fatigue, the burden of kidney disease, work status, sexual function, sleep, general health perceptions and role limitations, are aggravated by emotional and the physical health problems. Indeed, patients receiving hemodialysis experience tremendous complications including itching, pain, mental stress, lack of self-confidence, confusion, altered social and family relationships, social isolation, lack of mobility [27, 28]. The inability to maintain a job, lack of control on the disease and treatment and financial burden as well some other complications [29, 30, 31]. This study identified that there was a statistically significant relationship between HL and QOL. Its relationship revealed that as HL increases QOL is also increases (that is, positive relationship). This implies that the nature of one’s perceived experience of life, comfort, and happiness may be impacted by the extent that an individual has the potential to obtain, process, and understand necessary health information and services needed to make appropriate health decisions. Indeed, patients who had adequate or excellent HL had a considerably better QOL compared to their counterparts who had either insufficient or not enough HL ( $p<$ 0.01). Conclusively, in the context of the relationship of HL and QOL, it is vital to give more emphasis concerning improving the level of HL, especially individuals having inadequate HL (147). This implies that the nature of one’s perceived experience of life, comfort, and happiness may be impacted by the extent that an individual has the potential to obtain, process, and understand necessary health information and services needed to make appropriate health decisions.

5. Strengths of the study

The findings of this study were interpreted with respect to its strengths. Initially representative sample from different hospitals in the study area used and which makes the generalisability of the results reliable, and could give a good interpretation of the data in the perspective of health literacy and quality of life. Additionally, the inclusion of different settings and the descriptive nature of the outcomes allowed a general picture of the study in Iran. Furthermore, the convenience sampling technique is assumed to permit increased chances of obtaining more participants, Also, other study areas used in the study could contribute to more variety, as the respondents were chosen from different haemodialysis centers in the city. In this study, there were included based on a sound theoretical rationale and tools that were already verified reliable in other studies to measure constructs they are intended to measure from elsewhere findings. Lastly, the tools used in this study were used previously translated and validated a form in the Persian language. This contributed to getting a representative and accurate response from the participants.

6. Limitations

The information in this study was based on self-reports from patients. There is a probability that self-report responses create validity limitations as the patients may exaggerate symptoms in order to make their situation seem worse, or they may under-report the severity or frequency of symptoms in order to minimize their problems. Patients might also simply be mistaken or misremember the material covered by the survey.

7. Conclusions

There could be consistency in patients’ an ability of people the cognitive and social skills which determine the motivation and potential of individuals to gain access to, understand, appraise and use information in ways which promote and maintain optimal health decisions and quality of life. Here, our study indicated that there was a significant relationship.

Footnotes

Acknowledgments

Financial support for this study has been provided by the School of Nursing and Midwifery, Tehran University of Medical Sciences and International Campus Tehran University of Medical Sciences (No: 98-01-28-41699). The authors appreciate this school and patients who participated in this study.

References

Bahadori

Najari

and Alimohammadzadeh

, The relationship between health literacy and general health level of hemodialysis patients: A case study in Iran, Nephro-Urology Monthly 10 (2018), 2–9.

Jha

Garcia-Garcia

Iseki

Naicker

and Plattner

, Chronic kidney disease: Global dimension and perspectives, The Lancet 382 (2013), 260–272.

Xue

J.L.

J.Z.

Louis

T.A.

and Collins

A.J.

, Forecast of the number of patients with end-stage renal disease in the United States to the year 2010, Journal of the American Society of Nephrology 12 (2001), 2753–2758.

Collins

A.J.

Foley

R.N.

Gilbertson

D.T.

and Chen

S.C.

, United States renal data system public health surveillance of chronic kidney disease and end-stage renal disease, Kidney International Supplements 5 (2015), 2–7.

Barbosa

Moura

CLOBd

and PdM

, Quality of life and duration of hemodialysis in patients with chronic kidney disease (CKD): A cross-sectional study, Fisioterapia em Movimento 30 (2017), 781–788.

Levey

Atkins

Coresh

Cohen

Collins

and Eckardt

K.U.

, Chronic kidney disease as a global public health problem: Approaches and initiatives – A position statement from kidney disease improving global outcomes, Kidney International 72 (2007), 247–259.

Han

Lee

S.M.

Hong

J.Y.

Noh

H.J.

and Song

Y.K.

, Clinical outcomes of multidisciplinary team care on the regulation of chronic kidney disease-mineral and Bone disorder (CKD-MBD) in patients undergoing dialysis, Korean J Clin Pharm 26 (2016), 318.

Singh

R.G.

Singh

Rathore

S.S.

and Choudhary

T.A.

, Spectrum of intradialytic complications during hemodialysis and its management: A single-center experience, Saudi Journal of Kidney Diseases and Transplantation 26 (2015), 168.

Green

J.A.

Mor

M.K.

Shields

A.M.

Sevick

M.A.

Palevsky

P.M.

and Fine

M.J.

, Prevalence and demographic and clinical associations of health literacy in patients on maintenance hemodialysis, Clinical Journal of the American Society of Nephrology 6 (2011), 1354–1360.

10.

Srensen

, S. Van den Broucke Fullam

Doyle

Pelikan

and Slonska

, Health literacy and public health: A systematic review and integration of definitions and models, BMC Public Health 12 (2012), 80.

11.

N’Goran

A.A.

Pasquier

Deruaz-Luyet

Burnand

Haller

D.M.

and Neuner-Jehle

, Factors associated with health literacy in multimorbid patients in primary care: A cross-sectional study in Switzerland, BMJ Open 8 (2018), 018281.

12.

Culp

Lupu

Arenella

Armistead

and Moss

A.H.

, Unmet supportive care needs in US dialysis centers and lack of knowledge of available resources to address them, Journal of Pain and Symptom Management 51 (2016), 756–761, e2.

13.

Saxena

Carlson

Billington

and Orley

, The WHO quality of life assessment instrument (WHOQOL-Bref): The importance of its items for cross-cultural research, Quality of Life Research 10 (2001), 711–721.

14.

Shayan

Ozcebe

and Arici

, FP676 Evaluation of health literacy (HL) and quality of life (QOL) in hemodialysis patients: Is it different in diabetic patients? Nephrology Dialysis Transplantation 33 (2018), i273–i.

15.

Lopez-Vargas

P.A.

Tong

Howell

and Craig

J.C.

, Educational interventions for patients with CKD: A systematic review, American Journal of Kidney Diseases 68 (2016), 353–370.

16.

Pamuk

E.R.

Wagener

D.K.

and Molla

M.T.

, Achieving national health objectives: The impact on life expectancy and on healthy life expectancy, American Journal of Public Health 94(3) (2004), 378–383.

17.

Montazeri

Tavousi

Rakhshani

Azin

S.A.

Jahangiri

and Ebadi

, Health literacy for iranian adults (HELIA), Development and Psychometric Properties (2014).

18.

Dadipoor

Ramezankhani

Aghamolaei

Rakhshani

and Safari-Moradabadi

, Evaluation of health literacy in the Iranian population, Health Scope 7 (2018), e62212.

19.

Pakpour

A.H.

Yekaninejad

Molsted

Harrison

A.P.

Hashemi

and Saffari

, Translation, cultural adaptation assessment, and both validity and reliability testing of the kidney disease quality of life–short form version 1 (3) for use with Iranian patients, Nephrology 16 (2011), 106–112.

20.

Duarte

P.S.

Ciconelli

R.M.

and Sesso

, Cultural adaptation and validation of the “kidney disease and quality of life-short form (KDQOL-SF 1 (3))” in Brazil, Brazilian Journal of Medical and Biological Research 38 (2005), 261–270.

21.

Hays

R.D.

Kallich

J.D.

Mapes

D.L.

Coons

S.J.

Amin

and Carter

W.B.

, Kidney disease quality of life short form (KDQOL-SF), version 1 (3): A manual for use and scoring, Santa Monica, CA: Rand 39 (1997).

22.

Karimi

Keyvanara

Hosseini

Jazi

M.J.

and Khorasani

, The relationship between health literacy with health status and healthcare utilization in 18–64 years old people in Isfahan, Journal of Education and Health Promotion 3 (2014).

23.

Baker

D.W.

Parker

R.M.

Williams

M.V.

Clark

W.S.

and Nurss

, The relationship of patient reading ability to self-reported health and use of health services, American Journal of Public Health 87 (1997), 1027–1030.

24.

Guerra

C.E.

and Shea

J.A.

, Health literacy and perceived health status in Latinos and African Americans, Ethnicity and Disease 17 (2007), 305.

25.

Heidarzadeh

Atashpeikar

and Jalilazar

, Relationship between quality of life and self-care ability in patients receiving hemodialysis, Iranian Journal of Nursing and Midwifery Research 15 (2010), 71.

26.

Gerasimoula

Lefkothea

Maria

Victoria

Paraskevi

and Maria

, Quality of life in hemodialysis patients, Materia Socio-medica 27 (2015), 305.

27.

Ginieri-Coccossis

, P.Theofilou Synodinou

Tomaras

and Soldatos

, Quality of life, mental health and health beliefs in haemodialysis and peritoneal dialysis patients: Investigating differences in early and later years of current treatment, BMC Nephrology 9 (2008), 14.

28.

Mok

and Tam

, Stressors and coping methods among chronic haemodialysis patients in Hong Kong, Journal of Clinical Nursing 10 (2001), 503–511.

29.

Manavalan

Majumdar

Kumar

K.H.

and Priyamvada

, Assessment of health-related quality of life and its determinants in patients with chronic kidney disease, Indian Journal of Nephrology 27 (2017), 37.

30.

Macabasco-O’Connell

De Walt

D.A.

Broucksou

K.A.

Hawk

Baker

D.W.

and Schillinger

, Relationship between literacy, knowledge, self-care behaviors, and heart failure-related quality of life among patients with heart failure, Journal of General Internal Medicine 26 (2011), 979–986.

31.

Song

Mishel

Bensen

J.T.

Chen

R.C.

Knafl

G.J.

and Blackard

, How does health literacy affect quality of life among men with newly diagnosed clinically localized prostate cancer? Findings from the north carolina-louisiana prostate cancer project (PCaP), Cancer 118 (2012), 3842–3851.