RESEARCH ARTICLES
Health related quality of life of patients undergoing hemodialysis
Isabella Schroeder AbreuI; Claudia Benedita dos SantosII
IMSc and Ph.D. in Public Health Nursing, University of São Paulo at Ribeirão Preto College of Nursing. Professor, Nursing program, Universidade Estadual do Centro-Oeste. Guarapuava, Parana, Brazil. Email: i_enf@yahoo.com.br
IIStatistician. Associate Professor. Department of Pediatric Nursing and Public Health. University of São Paulo at Ribeirão Preto College of Nursing, Ribeirao Preto, Sao Paulo, Brazil. Email: cbsantos@eerp.usp.br
ABSTRACT
This study was aimed at describing patients undergoing hemodialysis in Guarapuava - Parana, Brazil between December 2004 and February 2005, according to socio-demographic and clinical characteristics, as well as the impact of chronic conditions and treatment on their quality of life. This was a cross-sectional study, in which data was collected from medical records, as well as interviews, and using the instrument SF-36, which was applied to 60 patients during hemodialysis sessions at a clinic located in the same town. The answers to the SF-36 were consistent (αmin = 0.68 and αmax = 0.96), except for the General Health Condition factor (α = 0.49). The results showed that the group studied had average scores below 75% in four of the factors studied. It was concluded that interventions performed by the multidisciplinary team are needed, given that the treatment of patients with chronic kidney disease is not only aimed at ensuring their survival, but also at maximizing rehabilitation and quality of life.
Keywords: Quality of life; kidney dialysis; chronic kidney disease; nephrology.
INTRODUCTION
Chronic Kidney Disease (CKD) relates to a syndrome diagnosis of generally irreversible progressive loss of the kidney function1. Epidemiological data shows that there are about 52,794 patients undergoing hemodialysis in Brazil2, and that the annual occurrence is around 100 new cases per million people3.
Despite increasing these patients’ life expectancy and attempting to suppress the symptoms, the techniques and therapies available have not been able to provide patients with their previous lifestyle in some cases, nor to direct professional healthcare to the quality of life issue4,5. Quality of life (QOL) is a multidimensional and subjective concept and involves multiple factors, much broader than the mere presence of lack of health6. In order to avoid ambiguity and distinguish between QOL in its broader sense and its specific application in clinical medicine and studies, the term health related quality of life (HRQOL) is often used4,7. Recently, attention is paid to the therapy aimed at improving the QOL/HRQOL8,9 of patients with chronic kidney disease.
Based on the above, this study was aimed at describing patients undergoing hemodialysis according to socio-demographic and clinical characteristics, as well as the impact of chronic conditions and treatment on their quality of life, through the responses provided to the generic instrument for assessing health related quality of life, the SF-36.
THEORETICAL FRAMEWORK
CKD is a result of multiple signs and symptoms arising from the kidneys’ failure to maintain the organism’s internal homeostasis, and is mainly caused by diabetes, hypertension, glomerulonephritis and cystic diseases, among others, which cause irreversible damage to the nephrons10,11.
Replacement kidney therapy occurs in a very late stage of CKD, when people’s kidney function is under 15-10% and the clinical uremia condition is serious12.
Hemodialysis is a treatment in which circulation is extracorporeal, and penetrates into an artificial semipermeable membrane immersed in an electrolyte solution that allows the filtration of blood toxins through concentration difference and the loss of liquids through pressure exerted on the system13. Among the replacement kidney therapies, hemodialysis is a highly complex type, partially replacing the kidney function14.
Technological and therapeutic advances have contributed to the increase of life expectancy in patients with chronic kidney disease without, however, providing them with their previous lives in qualitative terms15,16.
Therefore, QOL has turned into an important criterion to assess the effectiveness of health related treatments and interventions, given that attention started being paid to a therapy aimed at the QOL of patients with chronic kidney disease only very recently, as a relevant factor in the scenario of kidney therapy17.
METHOD
Cross-sectional study involving 60 patients undergoing hemodialysis at a clinic located in Guarapuava-PR, in the period from December 2004 to February 2005. In-transit patients and those who at the time of research presented unstable conditions or had difficulty understanding the items of the SF-36 were excluded.
Concerning the socio-demographic and clinical variables, besides gender, the information required for the initial hemodialysis at the clinic was considered and collected through the medical records and interviews: origin, age (measured through the date of birth and date of first hemodialysis), etiology of CKD and time undergoing hemodialysis. The variables of HRQOL were measured through an interview carried out in the initial stage of hemodialysis sessions, according to the instrument Medical Outcomes Study 36 – ItemShort Form Health Survey (SF-36), which was translated and validated in Brazil18. To conduct this research, authorization was obtained from the general management of the clinic, as well as approval from the Research Ethics Committee at the University of São Paulo at Ribeirão Preto College of Nursing, under registration number 0488/2004. The participants signed the Informed Consent Form.
RESULTS AND DISCUSSION
Socio-demographic variables
Of the 95 patients assisted at the clinic during the studied period, 60 (63%) participated in the research, 13 were excluded due to clinical instability or comprehension difficulty, and 22 refused to participate. In relation to gender, 65% were male and, concerning origin, 65% were from Guarapuava and the others from towns located in the region. As for the age at first hemodialysis, the minimum was 15 and the maximum 83, with an average age of 47 years and standard deviation of 15 years, indicating a concentration within the adult age group. Concerning the variable time undergoing hemodialysis, the minimum duration was seven days and the maximum 3737 days, with an average of 991.22 days and standard deviation of 873 days. Twenty-five percent of patients were undergoing dialysis for less than a year, approximately 50% between one and four years and 25% more than four years.
The etiology of the CKD is displayed in Table 1 below.
Variables of quality of life
To verify the internal consistency of the answers to the SF-36, Cronbach’s alpha coefficients were obtained. To measure the HRQOL of the patients studied, a score was obtained for each of the eight dimensions of the SF-36, applying a measurement scale ranging from 0 (the highest negative impact of chronic disease on the quality of life) to 100 (the lowest negative impact of chronic disease on the quality of life). The numerical results related to the dimensions are shown inn Table 2, including minimum, maximum, average scores and the respective standard deviations.
In relation to socio-demographic data, it can be highlighted that, in a study published in 2003 about the QOL of 184 adult patients with CKD undergoing hemodialysis, using the SF-36, 63% were male8, showing similar data to the present research.. Concerning origin, the fact that 65% of patients were from Guarapuava and the others from towns located in the region shows the profile of the clinic, which provides hemodialysis treatment to patients from the city and those living in the area covered by the Fifth Regional Health District.
In a study about QOL in post kidney transplant patients undertaken at Hospital Beneficência Portuguesa in Sao Paulo, in the period from May 2000 to February 2001, involving adult patients, the primary kidney disease was chronic glomerulonephritis in 51.4% of patients, while 7.0% of them were diabetic19, similar to the present research.
Concerning the variable time undergoing hemodialysis, in a study published in 1997, entitled Description of QOL of patients undergoing hemodialysis, involving adult patients, which consisted of 12 questions about sleep, conditions of patients at daytime, the importance of hemodialysis in their lives, the representation of patients, the dialysis therapy, their life projects and aspirations, it was concluded that the time undergoing hemodialysis may be associated with patients’ specific answers, as well as with different views of reality. The different times undergoing hemodialysis, which define the acute or chronic nature based on the hemodialysis routine, show different views of reality. Patients who were undergoing hemodialysis for a longer period of time firmly stated that hemodialysis had become “bearable” and even “natural” after a certain number of sessions.
This result was also seen in this study, with those patients who were undergoing hemodialysis for a shorter period of time visibly showing feelings of anger, frustration and discomfort.
According to a study about the meaning of hemodialysis for patients with chronic kidney disease, undertaken in 1999, hemodialysis becomes the hope of living for some people, since the disease is incurable20.
However, when using the SF-36, some components may affect patients’ QOL more strongly as the duration of their hemodialysis treatment increases, such as the physical component and emotional aspects, suggesting that patients who have CKD and are undergoing longer dialysis treatment show a progressively negative effect on family and social relationships8. Several authors, through the use of the SF-36, have shown that CKD and its associated treatments have a negative impact on the life of patients, and this can be seen by the low scores obtained in several dimensions21,22.
In this study, the Cronbach’s alpha coefficients obtained were satisfactory for all of the SF-36 dimensions (a = 0.88) and for each of the dimensions separately (amin = 0.68 e amax = 0.96), except in relation to the dimension general health condition (a = 0.49), which showed consistency in the patients’ answers to the SF-36 questions. Despite this result, some difficulty could be noted to understand some of the SF-36 questions during the interviews. Factors associated with this limitation are discussed in a Ph.D. assignment, in which the population consisted of hypertensive people23.
Below, each of the dimensions of the SF-36 is discussed separately. As there are no standardized scores for the dimensions of the SF-36, the dimensions are presented in descending order, based on the average scores (from the dimension with the highest positive impact on the QOL to the dimension with the highest negative impact on the QOL).
Social Aspects: This factor assesses the effects of physical health on social activities. From the scores obtained, it can be concluded that this dimension exerted the strongest positive impact on the QOL of the studied group (
= 75.2). When questioned about this subject, patients reported having social activities like going to church, attending family gatherings and even participating in the activities promoted by the healthcare team at the clinic. On the other hand, a study published in 2003 shows that approximately 63% of the patients studied spent all their time with the chronicity of the disease and/or with the treatment8.
This dimension is of upmost importance to approach most patients with CKD, given the physical and emotional dependency these patients establish in the disease process and in the maintenance of life24. Previous studies have shown that social support is a key factor for the disease process and also for the HRQOL25.
Mental Health: It is related to the scale of mood and wellbeing. When assessing the subjective aspect of patients, a study about the QOL in patients undergoing hemodialysis presented data showing that a type of psychological construction is developed during the time undergoing hemodialysis, even if unconsciously, as a way of dealing with the anxiety of confronting reality, death and what the author calls traumatic ritual, experienced by patients undergoing hemodialysis8. On the one hand, patients undergoing hemodialysis for a shorter period of time are more susceptible to emotional breakdowns and, on the other, patients undergoing hemodialysis for a longer period of time deal with the disease in an emotionally better manner.
Functional capacity: It is specifically related to the performance of daily activities, such as taking care of themselves, dressing themselves, showering and climbing stairs. Based on the results, it can be concluded that there was little impact of this dimension on the QOL of the patients studied, that is, an impact resulting from the presence or the extension of limitations related to physical ability, within the SF-36 scale. It is believed that the CKD and hemodialysis do not completely compromise the performance of moderate activities related to functional capacity, but they can be important factors in the presence or extension of limitations related to vigorous activities.
General Health Condition: It assesses the perceptions of individuals concerning their general health condition. In a study about the QOL of patients undergoing hemodialysis, the average found in this dimension was 54.3, which, according to the author, figured among the lowest scores on the SF-36 factors23. Higher scores were obtained in the present study.
Vitality: It is related to the subjective perception of health conditions. It is believed that the scores obtained in this study are almost directly related to the hemodialysis process that patients undergo, given that most of the answers were related to fatigue, especially at the end of the hemodialysis session, and reduced energy to perform activities that needed to be performed on the same day. A study about fatigue in people undergoing hemodialysis showed that there is a relation between fatigue and physical and psychosocial factors. Stress is a constant factor in the lives of people with CKD because the dialysis machine is incorporated into their self-image and symbolically represents life8.
Pain: It represents the level of pain and its impact on the performance of daily and/or professional activities and may therefore negatively influence the QOL. The average score found in this dimension may be related to the signs of muscle-skeletal deterioration, which can happen in patients with CKD and be a trigger factor for pain in these individuals, as well as for the pain caused by the puncture of the arteriovenous fistula and its complications, besides headaches, a common symptom in patients during and after a hemodialysis session.
Emotional Aspects: It is related to the reflection of the emotional conditions in the performance of daily or professional activities. The results show a negative impact of this dimension on the QOL, most evident at the start of the treatment, when patients are in the process of dealing with and adapting to the new conditions of life, in addition to the changes to their personal and family routine. In fact, when questioned about this item, those who stated that the emotional aspects did not interfere with their daily activities or with their social and family life were undergoing hemodialysis treatment for a longer period of time (approximately 25%). The reactions of the patients to this reality vary according to some of the stages of the disease, which are determined by the time undergoing hemodialysis. The high average score can be explained by the scores of those 25% of the patients who are under treatment for more than four years. Some patients with CKD face feelings of powerlessness and frustration in the beginning of hemodialysis treatment, which often lead to dissatisfaction and emotional damage, due to the burden of the disease and the socio-economic context determined by their condition26.
Physical Aspects: It measures the impact of physical health in the performance of daily or professional activities. This was the dimension with the lowest score (
= 24.2), and this finding is similar to other studies27-30. The score obtained in this study relates to the physical inability caused by the chronic disease, to the comorbidities and to the treatment they have to undertake. Many patients see hemodialysis, which often provides physical-related improvements, stabilizing blood pressure, edema and shortness of breath, as a problem. When questioned about this issue, a large number of people reported being unable to perform activities which they were used to before the occurrence of the disease, such as working, exercising, walking etc. Others referred to the physical aspects related to the clinical events or complications that arose during or even after the dialysis sessions, such as headaches and cramps, as well as physical limitations related to care for the arteriovenous fistula. In a study undertaken about the QOL of adult patients with CKD, also using the SF-36, one of the variables analyzed was age, and a negative correlation between age and the dimension physical aspects was observed29,31. This means that, as patients’ age advanced, their physical and functional activities were more compromised.
CONCLUSION
Measuring the HRQOL of people with CKD undergoing hemodialysis treatment through the specific dimensions of the SF-36 is a complex process, whose understanding is just beginning. The results of this study showed lower QOL scores in relation to the dimensions physical aspects, vitality and pain. It is important to emphasize that these dimensions mainly assess the performance of daily and professional activities, feelings of discouragement and lack of energy, symptoms often occurring in patients with chronic kidney disease.
Technological advances concerning hemodialysis have substantially contributed to the increase in these patients’ life expectancy, and this can be immediately observed; however, the indefinite use of treatment may interfere in some aspects of this population’s QOL, a fact that should explain the pattern of answers provided in the other dimensions which, despite showing relatively high average scores, were distributed fairly dispersed within the group. Time undergoing hemodialysis, for example, may negatively influence dimensions like mental health and emotional aspects in the beginning, which tends to decrease over the years, and positively influence dimensions like functional capacity and general health condition. It is understood that, even when living with a chronic disease, the studied group obtained satisfactory average scores in relation to the instrument factors used to assess the HRQOL in the components considered.
Based on these results, it can be concluded that interventions are needed, given that the treatment of patients with CKD is not only aimed at ensuring their survival, but also at maximizing rehabilitation and QOL. The multidisciplinary team should consider such interventions in order to establish programs for guidance and support, aimed at self-care, adherence to treatment, physical rehabilitation and inclusion of patients in the workforce or in the performance of work activities, with a view to improving the financial aspect and integrating them into society, making them feel useful and involving them in activities that will also improve their self-esteem.
REFERENCES
1.Barros E, Manfro RC, Thomé FS, Gonçalves LFS. Nefrologia: rotinas, diagnóstico e tratamento. Porto Alegre (RS): Artmed; 1999.
2.Sociedade Brasileira de Nefrologia. Censo SBN 2003-2004. Rio de Janeiro: SBN; 2005.
3.Carreira L, Marcon SS. Cotidiano e trabalho: concepções de indivíduos portadores de insuficiência renal crônica e seus familiares. Rev Lat Am Enfermagem. 2003; 11: 823-31.
4.Seidl EMF, Zanon CMLC. Qualidade de vida e saúde: aspectos conceituais e metodológicos. Cad Saúde Pública. 2004; 20: 580-8.
5.Harris LE, Luft FC, Rudy DW, Tierney WM. Clinical correlates of functional status in patients with chronic renal insufficiency. Am J Kidney Dis. 1993; 21(2): 161-6.
6.Kimura M. Tradução para o português e validação do Quality of life Index, de Ferrans e Powers [livre docência]. São Paulo: Universidade de São Paulo; 1999.
7.Fayers PM, Machin, D. Quality of life: assessment, analysis and interpretation. Chichester: Wiley and Sons; 2000.
8.Castro MC, Caiuby AVS, Draibe SA, Canziani MAF. Qualidade de vida de pacientes com insuficiência renal crônica em hemodiálise avaliada através do instrumento genérico SF –36.Rev Assoc Med Bras. 2003; 49:245-9.
9.Gomes CMA. Descrição da qualidade de vida dos pacientes em hemodiálise. Rev Med MG. 1997; 7(2/4):60-3.
10.Riella MC. Insuficiência renal crônica: fisiopatologia da uremia. In: Riella MC. Princípios de nefrologia e distúrbios hidroeletrolíticos. 3ª ed. Rio de Janeiro: Guanabara Koogan; 1996.456-76.
11.Roach S. Introdução à enfermagem gerontológica. Rio de Janeiro: Guanabara Koogan; 2003
12.Fortes VLF. Cotidiano da pessoa em tratamento dialítico domiciliar: modos criativos de cuidar-se [dissertação de mestrado] Florianópolis (SC): Universidade Federal de Santa Catarina; 2000.
13.Fermi MLV. Manual de diálise para enfermagem. Rio de Janeiro: Medsi; 2003.
14.Silva SA, Fava SMCL, Nascimento MC, Ferreira CS, Marques NR, Alves SM. Efeito terapêutico da música em portador de insuficiência renal crônica em hemodiálise. Rev enferm UERJ. 2008; 16:382-7.
15.Madeira EQP, Lopes GS, Santos SFF. A investigação epidemiológica na prevenção da insuficiência renal terminal: ênfase no estudo da agregação familiar. Méd online [online].1998 [citado em 20 set 2010]. Disponível em: URL: http://www.medonline.com.br/med- ed/med2/epidemio.htm.
16.Unruh MI, Hartunian MG, Chapman NM, Jaber BI. Sleep quality and clinical correlates in patients on maintean dialysis.Clin Nephrol 2003; 59(4): 280-8.
17.Suzuki K. Pesquisa sobre a qualidade de vida de pacientes de UTI: uma revisão de literatura [dissertação de mestrado]. São Paulo: Universidade de São Paulo; 2002.
18.Ciconelli RM. Tradução para o português e validação do questionário genérico de avaliação de qualidade de vida – Medical Outcomes Study 36 – Item Short Form Health Survey (SF-36) [tese de doutorado]. São Paulo: Universidade Federal de São Paulo; 1997.
19.Pereira LC, Chang J, Romão MAF, Abensur H, Araújo RT, Noronha IL, et al. Qualidade de vida relacionada à saúde em paciente transplantado renal. J Bras Nefrol. 2003; 25(1):10-6.
20.Lima AFC, Gualda DMR. Oral history of life: in search of the meaning of hemodialysis in chronic renal patients. Rev esc enf USP. 2001; 35:235-41.
21.Ferraz MB. Qualidade de vida: conceito e um breve histórico. Jovem Médico 1998; 4:219 -22.
22.Terada I, Hyde C. The SF-36: an instrument for measuring quality of life in ESRI patients. J Edtna Erca. 2002; 28:73-6.
23.Silqueira SMF. O SF-36 como instrumento genérico de avaliação da qualidade de vida relacionada à saúde de pacientes hipertensos [tese]. Ribeirão Preto (SP): Escola de Enfermagem de Ribeirão Preto – USP; 2005.
24.Kusumota L. Historia oral da insuficiencia renal cronica terminal e o tratamento dialítico de idosos [dissertação]. Ribeirão Preto (SP): Universidade de São Paulo; 2001.
25.Achat H, Kawachi I, Levine S, Berkey C, Coakley E, Colditz G. Social networks, stress and helth-related quality of life. Quality of life research. 1998; 7: 735-50.
26.Valderrábano F, Jofre R, López-Gómez JM. Quality of life in end-stage renal disease patients. Am J Kidney Dis. 2001; 38:443-64.
27.Meyer KB, Espindle DM, DeGiacomo JM, Constance SJ, Kurtin PS, Davies AR. Monitoring dialysis patients’ health status. Am JKidney Dis. 1994; 24:267-79.
28.Deo Oreo PB. Hemodialysis patient–assessed functional health status predicts continued survival, hospitalization, and dialysis–attendance compliance. Am J Kidney Dis 1997; 30:204-12.
29.Mingard G, Cornalba L, Cortinovis E, Ruggiata R, Mosconi P, Apolone G. Health-related quality of life in dialysis patients. A report from an Italian study using the SF-36 health survey. Nephrol Dial Transplant. 1999; 14:1503-10.
30.Merkus MP, Jager KJ, Dekker FW, Boeschoten EW, Stevens P, Krediet RT. Quality of life in patients on chronic dialysis: self-assessment 3 months after the start of treatment. Am JKidney Dis. 1997; 29:584 -92.
31.Moreno F, López Gomez JM, Sanz-Guajardo D, Jofre R, Valderrábano F. Quality of life in dialysis patients. A Spanish multicenter study.Nephrol Dial Transplant. 1996; 11:25–9.
Received: 03.07.2012
Approved: 24.01.2013