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Revista da Escola de Enfermagem da USP

Print version ISSN 0080-6234On-line version ISSN 1980-220X

Rev. esc. enferm. USP vol.50 no.3 São Paulo May/June 2016

http://dx.doi.org/10.1590/S0080-623420160000400006 

ORIGINAL ARTICLE

Quality of life in liver transplant recipients and the influence of sociodemographic factors

Calidad de vida en receptores de trasplante de hígado y la influencia de los factores sociodemográficos

Maria Isis Freire de Aguiar1 

Violante Augusta Batista Braga1 

José Huygens Parente Garcia2 

Clébia Azevedo de Lima3 

Paulo César de Almeida4 

Angela Maria Alves e Souza1 

Isaura Letícia Tavares Palmeira Rolim5 

1Universidade Federal do Ceará, Departamento de Enfermagem, Fortaleza, CE, Brazil.

2Universidade Federal do Ceará, Departamento de Cirurgia, Fortaleza, CE, Brazil.

3Universidade Federal do Ceará, Hospital Universitário Walter Cantídio, Fortaleza, CE, Brazil.

4Universidade Estadual do Ceará, Fortaleza, CE, Brazil.

5Universidade Federal do Maranhão, Departamento de Enfermagem, São Luís, MA, Brazil.

Abstract

OBJECTIVE

To verify the influence of sociodemographic factors on the quality of life of patients after liver transplant.

METHOD

Cross-sectional study with 150 patients who underwent liver transplant at a referral center. A sociodemographic instrument and the Liver Disease Quality of Life questionnaire were applied. The analysis of variance (ANOVA) was performed, as well as multiple comparisons by the Tukey test and Games-Howell tests when p <0.05.

RESULTS

Old age had influence on domains of symptoms of liver disease (p = 0.049), sleep (p = 0.023) and sexual function (p = 0.03). Men showed better significant mean values than women for the loneliness dimension (p = 0.037). Patients with higher educational level had higher values for the domain of stigma of liver disease (p = 0.014). There was interference of income in the domains of quality of social interaction (p = 0.033) and stigma of the disease (p = 0.046).

CONCLUSION

In half of the quality of life domains, there was influence of some sociodemographic variable.

Descriptors Liver Transplantation; Quality of Life; Health Evaluation; Health Profile

Resumen

OBJETIVO

Verificar la influencia de los factores sociodemográficos en la calidad de vida de los pacientes después del trasplante de hígado.

MÉTODO

Estudio transversal, con 150 pacientes sometidos al trasplante de hígado en un centro de referencia. Se aplicó un instrumento sociodemográfico y el cuestionario Liver Disease Quality of Life. Se llevó a cabo el Análisis de la Varianza (ANOVA) y comparaciones múltiples mediante la prueba de Tukey y Games-Howell, cuando p<0,05.

RESULTADOS

La edad avanzada presentó influencia en los dominios: síntomas de la enfermedad hepática (p=0,049), sueño (p=0,023) y función sexual (p =0,03). Los hombres presentaron mejores promedios significativos que las mujeres en la dimensión aislamiento (p=0,037). Pacientes con nivel de instrucción más alto presentaron mayores valores en el dominio estigma de la enfermedad hepática (p=0,014). Hubo interferencia de la renta en los dominios calidad de la interacción social (p=0,033) y estigma de la enfermedad (p=0,046).

CONCLUSIÓN

En la mitad de los dominios de calidad de vida, hubo influencia de alguna variable sociodemográfica.

Descriptores Trasplante de Hígado; Calidad de Vida; Evaluación en Salud; Perfil de Salud

Introduction

Chronic liver disease brings changes in various organ systems, causing complications that affect the physical functioning and performance of patients. These include muscle cramps, weight loss, hepatic encephalopathy and ascites, and influence the feeling of well-being and satisfaction with life of patients, and negatively affect their quality of life (QOL)1. Faced with a degenerative and progressive disease, liver transplantation is recommended as an alternative therapy, allowing for the reversal of the terminal condition and improvement of these patients' quality of life2.

Over the past ten years, Brazil has experienced many advances in the sector, with the creation of new transplant centers and increased number of organ donors and transplants. In 2014, there were 64 active liver transplant teams registered with the National Transplant System, which performed 1,775 liver transplants, ranking second in number of solid organ transplants3.

Given this reality, studies on the quality of life of these patients became necessary to understand the disease impact on daily activities, and obtain information for comparing the different types of treatments and analyze the costs.

The increased concern about individuals' quality of life has led to the development and application of various generic and specific instruments. Generic instruments have certain limitations related to the identification of specific areas of diseases in certain health conditions. In turn, questionnaires focused on evaluation of specific diseases provide greater specificity and sensitivity in these patients than in the general population4.

Presently, specific questionnaires were designed to assess quality of life. They can be applied in specific populations with certain pathological conditions, and offer the advantage of a more detailed analysis of the impact and limitations caused by the disease in the lives of individuals, identifying particularities of the situation. The highlights among specific instruments for patients with liver disease are the Chronic Liver Disease Questionnaire (CLDQ), the Liver Disease Symptom Index (LDSI) and the Liver Disease Quality of Life (LDQOL)5.

During the literature search on studies assessing the quality of life in patients undergoing liver transplant, studies using specific instruments were scarce. In Brazil, was identified a single study with application of the Liver Disease Quality of Life (LDQOL)6, also used in the present study.

After transplantation, patients face a difficult routine that involves frequent medical follow-up, exams, risks of complications such as rejection and infection, the need for continuous immunosuppressive therapy and change of habits. Nevertheless, studies evaluating the recipients' quality of life have demonstrated the positive impact of liver transplant on quality of life6-7.

Thus, further studies are needed to deepen other determinants of health that can affect the quality of life of these people, including demographic and social factors. This will also provide subsidies for the planning of individualized and integrated care to liver transplant patients, and contribute to the knowledge production in the area.

Identifying patients at higher risk of decrease in the levels of quality of life and less satisfaction with the transplant results may help transplant teams (social workers, nurses and doctors) to develop early interventions and multidisciplinary approaches that potentially improve the outcomes of quality of life of these patients.

The aim of this study was to verify the influence of sociodemographic factors on the quality of life of patients after liver transplant.

Method

This is a cross-sectional, quantitative study performed in a national reference center for liver transplants in the city of Fortaleza, state of Ceará (CE).

The study population consisted of 425 patients who underwent liver transplant within the ten-year operating period of the unit, and aged above 18 years. The finite sample was calculated considering the confidence level of 95% and a sampling error of 4%.

The following inclusion criteria were used to determine the sample: liver transplant recipients for at least six months, aged 18 years and over, coming from any state in the country, and regularly monitored at the transplant service. The sample included 150 patients.

The following recipients were excluded: transferred to other states, patients undergoing liver transplants for fulminant hepatitis or combined liver-kidney, as well as patients with hearing loss that could prevent conducting the interview.

The data collection period was from July/2012 until January/2013, when the sociodemographic instrument and the Liver Disease Quality of Life (LDQOL) questionnaire were applied to assess the quality of life (translated and validated version for the Brazilian population). The questionnaire comprises 17 questions directed to the signs and symptoms of the disease and the effect of treatment in everyday life, divided into 12 domains: symptoms of liver disease (17 items), effect of liver disease on daily activities (10 items), concentration (7 items), memory (6 items), sleep (5 items), loneliness (5 items), hope (4 items), quality of social interaction (5 items), health distress (4 items), stigma of liver disease (6 items), sexual function (3 items) and sexual problems (3 items)8.

Each question has a proper response system that evaluates the frequency, intensity, or agreement with statements on a Likert scale, with response scores ranging 0-6 points. The score of each item is converted to values of 0-100, with subsequent calculation of mean scores for each domain. Higher scores represent higher quality of life.

The validation of the LDQOL original version was performed in adults with advanced chronic liver disease and candidates for liver transplant. Thus, the authors emphasized the instrument usefulness in studies evaluating the outcomes of quality of life of patients undergoing liver transplant or other medical and surgical interventions for the treatment of disease9.

Patients were invited to participate in the study in the days of return for post-operative follow-up visits in the transplant service. Data collection was conducted in the waiting room of the liver transplant clinic before and/or after the post-transplant follow-up appointments, taking due care to provide the necessary privacy. The LDQOL was applied to patients by the researcher after six months of transplant through an interview by preference of participants, since it could be self-administered.

Data analysis was performed using the Statistical Package for the Social Sciences (SPSS) version 18.0. In descriptive statistical analysis, categorical variables were represented by absolute (n) and relative (%) frequency, and the score results of the LDQOL domains were expressed as mean and standard deviation (SD).

The analysis of variance (ANOVA) was used to check for significant differences of mean among groups according to sociodemographic variables, and when p<0.05, the Tukey and Games-Howell tests were used for multiple comparisons. The significance level adopted was 0.05.

The study met the national and international standards of ethics in research with human beings. The project was approved by the Research Ethics Committee of the Hospital Universitário Walter Cantídio under number 041.06.12. Patients authorized their participation by signing the Informed Consent form.

Results

Table 1 presents the sociodemographic profile of patients undergoing liver transplant.

Table 1 Distribution of liver transplant recipients according to sociodemographic profile - Fortaleza, Ceará, Brazil, 2013 

Characteristics N %
Gender
Male 120 80.0
Female 30 20.0
Age (years) Mean ± SD*
18-39 28 18.8 52.4 ± 12.9
40-59 70 47.0
60-76 51 34.2
Race
White 45 30.0
Mixed race 90 60.0
Black 14 9.3
Indigenous 1 0.7
Marital status
With partner 102 68.0
No partner 48 32.0
Years of study Mean ± SD*
None 12 8.0 9.8 ± 4.3
1-9 48 32.0
10-12 56 37.3
13-18 34 22.7
Occupation
Active 58 38.7
Retired 53 35.3
Pensioners, sick leave 24 16.0
None 15 10.0
Income (minimum wage)
None 15 10.0
Up to 2 65 43.3
3 to 4 38 25.3
5 to 10 20 13.3
11 or more 12 8.0

*SD: standard deviation.

R$ 678.00 reais, 2013, Brazil.

Note(n = 150)

Participants were predominantly male (80%); the prevalent age group was 40-59 years (47%) with a mean of 52.4 years; the highest proportion was of mixed race participants (60%), and most lived with a partner (68%).

The educational level of participants revealed that the majority (37.3%) had 10-12 years of study, followed by 1-9 years (32%) and a mean of 9.8 years of study. Regarding occupation, 38.7% were professionally active, and among the inactive, 35.3% were retired. Most participants reported income of up to two minimum wages (43.3%).

Table 2 shows the relationships between the mean values of LDQOL domains and sociodemographic characteristics.

Table 2 Analysis of the influence of sociodemographic characteristics on domains of quality of life of the LDQOL scale after liver transplant - Fortaleza, Ceará, Brazil, 2013.  

Domains
Variables Symptom Effect Concentration Memory Interaction Distress
Mean ± SD
Age (years) p =0.049 p =0.422 p =0.336 p =0.595 p=0.221 p=0.823
18-39 95.2±6.4 90.4±11.4 95.1±12.2 82.4±22.3 83.8±9.1 87.5±15.5
40-59 94.8±7.1§ 92.5±10.1 92.7±15.4 83.8±21.2 85.2±11.3 88.8±15.4
60-76 91.3±10.8 89.9±12.9 89.9±16.4 79.6±24.0 81.6±11.4 87.1±15.7
Mean ± SD
Gender p=0.535 p=0.316 p=0.446 p=0.964 p=0.538 p=0.121
Male 93.7±9.1 91.7±10.7 91.7±15.9 82.2±23.2 84.1±10.8 86.9±16.4
Female 92.5±8.1 89.4±13.4 94.0±12.2 82.4±18.8 82.7±12.2 91.8±10.2
Mean ± SD
Study (years) p=0.281 p=0.536 p=0.115 p=0.710 p=0.951 p=0.741
Up to 8 95.0±6.1 90.8±10.7 94.0±13.2 84.1±19.8 83.6±10.0 88.9±13.4
9-12 92.6±10.4 90.5±12.5 89.1±17.3 80.7±23.0 84.1±11.6 86.7±16.4
13-18 92.6±9.6 93.1±10.0 94.7±13.3 81.9±25.1 83.5±11.8 88.2±16.9
Mean ± SD
Occupation p=0.176 p=0.300 p=0.153 p=0.177 p=0.187 p=0.208
Inactive 92.7±9.7 90.5±11.2 90.7±16.4 80.2±23.5 82.9±11.2 86.6±16.8
Active 94.7±7.4 92.4±11.5 94.4±12.9 85.3±20.1 85.3±10.6 89.9±13.0
Mean ± SD
Income (MW) p=0.570 p=0.218 p=0.255 p=0.620 p=0.033 p=0.279
< 2 94.2±6.7 89.6±11.5 93.9±13.5 82.7±22.1 81.7±11.0‡ 87.6±14.3
2-3 92.5±10.8 91.8±11.8 89.6±16.9 80.3±22.2 84.2±11.7 86.2±17.3
4-7 93.8±9.1 93.9±9.6 93.4±14.8 85.2±23.4 88.2±8.2 92.0±13.7
Domains
Sleep Loneliness Hope Stigma Sexual function* Sexual problems
Mean ± SD
Age (years) p = 0.023 p = 0.521 p = 0.203 p = 0.937 p = 0.03 p = 0.173
18-39 82.2±16.0 94.8±13.0 93.4±10.0 94.4±7.7 91.3±8.6 88.8±19.2
40-59 79.7±16.6§ 97.2±10.0 92.8±13.8 93.4±12.7 91.4±14.7§ 94.1±22.9
60-76 72.6±17.3 94.8±15.3 88.1±20.0 93.7±11.5 81.0±23.4 81.9±29.7
Mean ± SD
Gender p = 0.366 p = 0.037 p = 0.792 p = 0.934 p = 0.941 p = 0.661
Male 78.3±17.0 97.0±11.4 91.4±15.7 93.7±10.9 88.1±18.6 89.5±25.1
Female 75.2±16.9 91.7±16.0 90.5±16.0 93.5±13.4 88.5±10.2 83.3±27.8
Mean ± SD
Study (years) p = 0.315 p = 0.148 p = 0.772 p = 0.014 p = 0.526 p = 0.734
Up to 8 79.4±15.0 93.4±17.2 91.9±13.6 94.1±9.9 86.2±21.7 87.8±30.8
9-12 78.3±15.7 98.0±7.2 90.1±15.3 90.9±14.4§ 87.7±17.9 89.4±26.8
13-18 73.9±21.6 96.2±11.0 92.2±19.6 98.0±4.5 91.6±7.5 87.9±18.6
Mean ± SD
Occupation p = 0.400 p = 0.800 p = 0.374 p = 0.515 p = 0.168 p = 0.554
Inactive 76.8±18.1 95.7±13.8 90.3±17.0 93.2±10.2 86.0±21.6 84.5±31.7
Active 79.2±15.0 96.3±10.4 92.7±13.5 94.4±13.3 91.0±9.5 93.5±13.5
Mean ± SD
Income (MW) p = 0.069 p = 0.257 p = 0.950 p = 0.046 p = 0.677 p = 0.017
< 2 78.8±16.4 94.0±16.0 91.6±13.8 93.6±11.8 88.6±16.5 98.1±7.8
2-3 74.1±17.1 97.6±8.8 90.7±15.4 91.6±12.7§ 89.4±16.9 87.5±26.3
4-7 82.9±17.4 97.1±9.4 91.2±20.6 98.2±5.0 85.0±21.0 66.6±39.0

*n = 94 for the sexual function domain.

n = 42 for sexual problems.

The first and third groups differed.

§The second and third groups differed.

Note(n = 150)

With respect to age range, in the post-transplant period, patients aged 60 years and over had lower mean values in ten out of 12 LDQOL domains, compared to the other groups. Age had interference on results of symptoms of liver disease (p = 0.049), sleep (p = 0.023) and sexual function (p = 0.03). There was a significant difference between the age group 18-39 years and 60-76 for the sleep domain (82.2 vs. 72.6, p = 0.042), and between the age range 40-59 years and 60-76 for sexual function (91.4 vs. 81.0; p = 0.033), with weaker difference (p = 0.060) between the last two in the domains of symptoms (94.8 vs. 91.3) and sleep (79.7 vs. 72.6).

As for participants' gender, there was balance between quality of life scores in most dimensions in the post-transplant period. Men presented higher significant values of QOL than women only for the loneliness domain (97.0 vs. 91.7, p = 0.037).

In the educational level analysis, for most domains there was no correlation between years of study and the quality of life of participants, with tendency to homogeneity of answers. There was difference between means only for the domain of stigma of the disease (p = 0.014), in which patients with 13 or more years of study showed higher values compared to less educated groups. Significant differences were found when comparing patients with up to eight years of study and 13-18 years (94.1 vs. 98.0, p = 0.037), and between groups with 9-13 years of study and 13-18 years (90.9 vs 98.0 p = 0.002). There were no correlations between occupation and quality of life among the domains of LDQOL.

Regarding socioeconomic level, there was an association between income and quality of life of patients (r = -0.129; p = 0.001). The income has only affected the results of the domains of quality of social interaction (p = 0.033) and stigma of the disease (p = 0.046). In the multiple comparison analysis, patients with income of less than two minimum wages (MW) showed significant differences compared to those with between four to seven MW in the domains of quality of social interaction (81.7 vs. 88.2, p = 0.008) and stigma (93.6 vs. 98.2, p = 0.027). The group with income of two to three MW differed from the group with income of more than four in MW in the stigma domain (91.6 vs. 98.2; p = 0.003).

Discussion

Results of the demographic profile indicated that most study participants were male (80%), and in the age range of 40-59 years (47%) and of 60 years or over (34.2%), of mixed race (60%) and lived with a partner (68%). The percentage of males in this study was higher than that found in a similar Brazilian study (67.3%)8, and closer to another study with candidates for liver transplant (75.3%)10.

The analysis of the quality of life after transplant in relation to gender showed homogeneity in most scores of the LDQOL domains. This result can be explained by the difference in sample size.

The predominant age group was corroborated by a national study that examined the outcomes of transplantation of organs and tissues for a ten-year period, in which was observed that 49% of recipients were in the age range of 41-60 years11. However, an international study on sociodemographic differences in liver transplant services obtained higher percentage (79.3%), considering the age range of 40-65 years12.

In this study, there was an association between older age and decline of QOL scores (p <0.05) in the domains of symptoms of liver disease, sleep and sexual function.

Data on race diverged from international studies, in which the white color predominated among liver transplant recipients in Pennsylvania, with 75.8%13, and 95.6% in the Medical Center of the University of Pittsburgh14. These differences are related to regional variations in Brazil, considering that data were in proportion to the general population of the northeast and north of the country, accounting for 62.7% and 71.2% of mixed race, respectively. These were the places of higher origin of patients treated at the studied transplant center15.

Studies assessing the interference of demographic factors in the quality of life of patients referred to or undergoing transplant are scarce. A study conducted in Italy compared the quality of life before and after the transplant, and the demographic characteristics showed no significant differences between groups16. Another study performed in Cambridge (England) included patients in follow-up of 30 years post-transplant, and demonstrated that receptors of female gender and aged over 60 years were important factors associated with reduced physical functioning of the SF-36 scale17.

The marital status of participants was in line with findings of a study conducted in Belgium, in which most liver transplant patients were married, corresponding to 69.8% of the sample18.

The patients' educational level was considered intermediate as 37.3% reported 10-12 years of study, and 40% less than ten years of study. These data are in agreement with findings of a Brazilian study with pre- and post-transplant patients19, in which the majority had only primary school, and differed from data of two international studies in which 56.4% and 67.6% of liver transplant recipients had higher education20-21.

In the educational level variable was found a positive association between years of schooling and the quality of life level in the domain of stigma of the disease (p = 0.014), without significant differences for the other evaluated domains.

Several studies have addressed the influence of socioeconomic factors on health and quality of life of individuals. Thus, educational level is an important element when analyzing determinants of health of a population. Studies have shown the relationship between social conditions and health status. Among these, educational level has a direct influence on the health care of people, and may affect the development of self-care concepts in health, the environmental control, risk behaviors, prevention and lifestyles22.

A study examining the influence of socioeconomic and demographic factors in the quality of life of liver transplant recipients found that patients with higher educational level had significant scores in the SF-36 Physical Functioning domain20.

Regarding occupation, most (38.7%) of the patients were professionally active, followed by the retired (35.3%), corroborating a study in which employees and housewives corresponded to 37.3%23.

With advancement of the chronic liver disease and its clinical manifestations, many patients are unable to work and need to quit their jobs either for medical reasons or to undergo the disease treatment in a transplant center outside their city. The return to work and social participation are important parameters in assessing the success of liver transplantation, considering all physical and social burden resulting from the disease and need for treatment.

In the present study was not identified a correlation between occupation and quality of life in the domains of the instrument used. The positive influence of labor activity in the lives of individuals was highlighted in the study that showed employed receivers had higher mean scores compared to unemployed/retired receivers in the following SF-36 domains: physical functioning (p <0.001) physical role (p = 0.0012), vitality (p = 0.01), social functioning (p = 0.037), bodily pain (p = 0.14) and general health (p = 0.0972)20.

A study of 353 liver recipients in Finland using the 15D questionnaire instrument and evaluation of ability to work corroborates these data. The authors found that among 347 respondents, a third of all patients was employed during the study period, without differences depending on the etiology of indication. Among respondents of working age (20-65 years old), with n = 268, 44% were active and these had better QOL than unemployed respondents of working age, with clinically important and statistically significant difference (p <0.0001)24.

The predominant income of the study participants was considered low because most received up to two minimum wages (43.3%) and three to four (25.3%), totaling 68.5% of the sample. These data were similar to the findings of a retrospective study conducted in Italy with 221 liver transplant recipients, in which 80% of recipients had low socioeconomic status25.

Several authors have highlighted the influence of income on the health of individuals. People with higher income can enjoy better health status by allowing the use of income to buy goods and health services (medical consultations, medication, health insurance, exams, treatments), in addition to better housing and education conditions, and preventive care26.

In Hungary, a case-control study was conducted with 287 cases of chronic liver disease and 892 controls. It found that people with financial situation perceived as bad or very bad had 80% greater risk of disease development compared to people with good or very good financial situation27.

Similarly, a study with patients undergoing liver transplantation found that data related to graft failure, death and occurrence of complications had better outcome in patients of higher socioeconomic status. The mortality rates tripled in receptors with lower socioeconomic levels (18.6%) compared to the high level (4.5%). The Cox univariate and multivariate regression analysis revealed that the higher the educational level and socioeconomic status the lower the patient's risk of death (p = 0.05, p=0.03, respectively), and that socioeconomic status is a significant independent predictor of overall survival of these patients25.

Since this is a cross-sectional study, it was not possible to verify sociodemographic information before transplantation for comparison with the post-transplant period. Thus, the results point to the importance of future longitudinal studies to increase knowledge of the studied characteristics and the impact on these individuals' quality of life.

Furthermore, the generalization of results is limited to contexts similar to the Brazilian reality, considering the variation of demographic and social conditions in different countries.

Conclusion

The analysis of sociodemographic aspects after transplant has revealed a negative influence of advancing age on the domain scores of symptoms of liver disease, sleep and sexual function. The results of mean by gender were homogeneous, with significantly higher values for males in the loneliness domain. Receivers with higher educational level had better scores in the domain of stigma of the disease. Patients with higher incomes had better values in the domains of quality of social interaction and stigma of the disease.

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Received: October 29, 2015; Accepted: April 20, 2016

Corresponding author: Maria Isis Freire de Aguiar. Rua Alexandre Baraúna, 1115 - Bairro Rodolfo Teófilo. CEP 60430-160. Fortaleza, CE, Brazil. isis_aguiar@yahoo.com.br

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