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Quality of life of patients after lung transplantation
section nursing
kontakt 16 (2014) e9–e16
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Original research article
Quality of life of patients after lung transplantation Lenka Špirudová a,*, Jaroslav Nol b a b
Silesian University in Opava, Faculty of Public Policy, Institute of Nursing, Czech Republic Charles University in Prague, Prague-Motol University Hospital, Pneumology Clinic, Czech Republic
article info
abstract
Article history:
The study is the first tentative nursing probe into the quality of life of Czech patients after
Received 29 April 2013
lung transplantation. The main objective of the study is to determine the quality of life in
Accepted 21 December 2013
adult patients after lung transplantation in the Czech Republic and point out ways in which
Available online 20 February 2014
nursing can contribute to improving the quality of life of these patients.
Keywords:
examines eight dimensions of the quality of life, and the EQ-5D-5L, which examines six
Quality of life
dimensions of the quality of life. In total, the sample of respondents comprised of 61 patients,
The study used a combination of two standardized questionnaires: the SF-36, which
Patient
representing 67.80% of the total population of living adult patients who had ever undergone
Lung transplantation
lung transplantation in the Czech Republic. The results of the study correspond to published
Nursing
information on the progress of the quality of life in patients after lung transplantation, namely:
Education
after lung transplantation, the quality of life is significantly improved (peak improvement
Support
occurs in the period between the 13th and 36th month); however, over time, it deteriorates again. In our study, deterioration in overall health was recorded as an increasing trend from about the fourth year after transplantation. According to the SF-36 and EQ-5D-5L questionnaires, the studied sample of lung transplant patients exhibited the most significant variations in the quality of life, compared with the general population, in the following areas: social functioning, bodily pain, physical limitations – mobility, and emotional problems such as anxiety or depression. Based on the results, a new methodology is proposed to nurse-specialists concerning continuous long-term support work with lung transplant patients, which could be effective and could bring relief to patients in areas they assess as difficult to manage. # 2014 Faculty of Health and Social Studies of University of South Bohemia in České Budějovice. Published by Elsevier Urban & Partner Sp. z o.o. All rights reserved.
Introduction Lung transplantation is a serious interference with the patient's life, which on one hand brings hope for a better life without a number of restrictions; on the other hand, it is necessary to deal with other issues that the chronically ill
patient so far has not become familiar with (e.g. the need for prolonged immunosuppression; having a foreign organ inside your body as an integral part of one's self instead of oxygen equipment, and other issues). For many patients (children and adults) with a devastating lung disease (see Table 1), lung transplantation is the last treatment option. In the Czech Republic, this highly specialized treatment is
* Corresponding author at: Slezská univerzita, Fakulta veřejných politik, Ústav ošetřovatelství, Hauerova 728/4, 746 01 Opava, Czech Republic. E-mail address: [email protected] (L. Špirudová). http://dx.doi.org/10.1016/j.kontakt.2013.12.002 1212-4117/# 2014 Faculty of Health and Social Studies of University of South Bohemia in České Budějovice. Published by Elsevier Urban & Partner Sp. z o.o. All rights reserved.
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Table 1 – Summary of medical diagnoses that were the cause for lung transplantation in patients at the Motol FN (UH) until 1/10/2012.
performed only at the University Hospital in Prague in Motol [1].
According to statistics, the need for lung transplantation in the Czech Republic ranges from 3 to 5 per million inhabitants per year, 70–80% of patients live for one year after lung transplantation, 50–55% of patient live for at least five years, and 25% of the operated patients live for more than 10 years after the surgery [6]. Survival time is determined mainly by primary diagnosis and the general state of the organism. In the Czech Republic, around 40–50 patients are on the waiting list. About 20 transplants are performed annually. The reason for such a ‘‘small’’ number of lung transplants is the small number of suitable lung donors. Several types of lung transplantation are performed: unilateral lung transplantation is the most common. It is particularly suitable for the elderly and for those who also suffer from other associated diseases. It is performed in patients with chronic obstructive pulmonary disease (COPD), idiopathic pulmonary fibrosis (IPF), and sarcoidosis. Bilateral lung transplantation – is required in diseases where there is recurrent chronic inflammation, most commonly in patients with cystic fibrosis (CF). Living-donor lobar lung transplantation – is rarely indicated in paediatric patients. One lung lobe, most commonly from one of the parents, is transmitted to the affected area. The most extensive and major procedure is heart–lung transplantation [7, p. 261].
Lung transplantation
Quality of life
Lung transplantation (lung transplantation – LuTX [LT]) is indicated for patients in the terminal stages of lung disease, when the estimated survival time is 1–1.5 years, after all conservative treatment options have been exhausted, and the health status continues to deteriorate [2, p. 234]. This method brings a chance of prolonging life and improving its quality to patients with an otherwise incurable and frequently fatal disease [3, p. 21]. ‘‘Historically, the first lung transplant was performed by James Hardy and colleagues in 1963 in the USA, when he decided to remove and replace the left lung of a 58-year-old man suffering from cancer and chronic glomerulonephritis. After surgery, the patient underwent irradiation using cobalt and received immunosuppressive therapy with antimetabolites (Imuran). He died on the eighteenth day from kidney failure, although, in addition, his autopsy revealed a suture fistula in the unhealed bronchus’’ [4, p. 147]. ‘‘Initially, these operations did not produce good results; therefore, they were performed no more than sporadically. Only in the 1980s, the development of immunosuppressive therapy and the introduction of cyclosporine led to further development of transplantation medicine. Before the development of cyclosporine, immunosuppression consisted in the administration of large doses of corticosteroids, which worsened wound healing and led to a number of infectious complications, which killed the patients in the first six months after transplantation’’ [2, p. 234]. The first single lung transplantation in the Czech Republic was performed in December 1997, and transplantation of both lungs was performed a year later [2, p. 23]. By the end of 2007, a total of 28,488 lung transplants had been performed worldwide. At present, approximately 2700 such procedures are performed annually in one hundred and fifty specialized centres [5, p. 11]. In the Czech Republic, 14 lung transplants were performed from 1/1/2012 to 30/9/ 2012.
Quality of life has many definitions; however, they all basically attempt to define elementary life satisfaction as a multidimensional existential phenomenon. The work of Olišarová et al. [8, pp. 14–21] provides both an overview of the definitions and an overview of the studies completed on the quality of life in relation to various clinical conditions in the Czech Republic since 2000. ‘‘Research on the quality of life in health care was initiated in the 1970s and was generally potentiated by two factors. The first, pharmaco-economic factor was the need to assess the financial cost and effectiveness of treatment (due to the increasing pressure to reduce costs) as well as the need to identify priorities in the event of allocation of resources. The second factor was an effort to comprehensively document the clinical success of treatment, or more precisely, of therapeutic interventions on the patient's health status’’ [9, p. 41]. This fact has led to the emergence of the so-called concept of HRQoL (Health-Related Quality of Life). ‘‘In general, it can be said that health-related quality of life is primarily concerned with professionally provided health care, and it becomes an important indicator of its outcome’’ [10, p. 6]. A number of standardized questionnaires are available for measuring quality of life; however, there is no universal instrument that would be generally acceptable. In an attached summary, the work of Olišarová, Dolák, Tóthová [8, pp. 14–21] has included studies on the quality of life in the area of transplantology as well; however, these studies only examined the quality of life in haematological patients (from 2000 to 2010). So far, no other studies from the area of transplantology have been registered in the Czech Information System for the collection, processing, and use of the results of research, development, and innovation (IsVaVaI [The R&D Information System]) since the year 2000. Therefore, from this perspective, our study has probably been the first tentative probe to assess Czech patients' quality of life after lung transplantation.
Medical diagnosis as an indication for lung transplantation in the patient
Absolute frequency
Relative frequency
CF – cystic fibrosis CHOPN (COPD) – chronic obstructive pulmonary disease PF – pulmonary fibrosis KFA (CFA) – cryptogenic fibrosing alveolitis EAA – extrinsic allergic alveolitis LAM – lymphangioleiomyomatosis IPAH – idiopathic pulmonary arterial hypertension PCD – primary ciliary dyskinesia CPFE – combined fibrosis and emphysema syndrome
16 40
17.80 44.44
14 9
15.55 10.00
3 5 1
3.33 5.55 1.11
1 1
1.11 1.11
Total
90
100.00%
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Literature review We worked using the evidence based practice method. By means of the PICO-T method, we inferred clinical questions and strings of key terms with Boolean operators for searching the EBSCO and Google Scholar databases: 1. The impact of nursing care on the quality of life in adult patients after lung transplantation. ‘‘nursing care’’ and ‘‘adult’’ and ‘‘lung transplantation’’ and ‘‘quality of life’’. 2. Education of lung transplant patients on the treatment regimen and quality of life: ‘‘education’’ and ‘‘patient’’ and ‘‘lung transplantation’’ and ‘‘treatment regimen’’ and ‘‘quality of life’’. We found six foreign studies and one Czech study, which, however, did not examine the quality of life in patients after lung transplantation, but before lung transplantation – i.e. in those who had been placed on a waiting list [11]. Most frequently, the studies used the SF-36 questionnaire, which was supplemented in some of the studies, even by the SGRQ (‘‘Saint George's Respiratory Questionnaire’’) or questionnaires for measuring depression and anxiety. Other instruments for measuring quality of life that we detected included the EuroQol EQ-5D-5L and the WHOQOL-BREF. It was not possible to conduct a meta-analysis of the identified studies because in addition to variations in the instruments used for measuring quality of life, there have been significant differences in the samples of respondents as well as in the ways of presenting the results. For the purposes of our own study, these findings were important: the selected measurement instrument SF-36 had been chosen correctly. The published results that have given evidence of a truly higher quality of life, in the studied dimensions, in patients after lung transplantation as opposed to before transplantation, are of significance; however, it is possible to expect persistent worsening in terms of pain and reduced physical fitness [12]. Such problems may develop, to a minimum extent, also in patients discharged to home care after transplantation, although it appears that the most significant improvements in the quality of life occur within 6 months of surgery [13]. Even in these patients, their quality of life can be affected by anxiety and depression; however, at other times, their vitality and mental health may not deviate significantly from the general population. Nonetheless, in a study conducted by Austrian researchers, the patients exhibited a lower quality of life in all dimensions compared with the general population, despite the good results of transplantation and an enhanced quality of life [14]. A study by Anyanwu et al. [15] from Great Britain mentions that within 6 months of transplantation, one or more extreme problems occur in 25% of single lung recipients, 7% of bilateral lung recipients, and 14% of heart–lung recipients. However, more than 36 months after lung transplantation, as many as 90% of patients after single LT, 61% of patients after bilateral lung transplantation, and 43% of patients after heart–lung transplantation reported extreme problems in one or more dimensions. Lung transplantation is a standard way of dealing with the final stages of severe cardiopulmonary diseases, but it is not a
problem-free treatment with a long-term perspective for everyone. This is an important factor that must be accepted also in the nursing care management of these patients, who fall into the category of long-term patients. Standardized questionnaires for measuring the quality of life are designed for mass measurements; it is not possible to identify, from within the monitored categories, any particular problems of a specific patient – an individual – such as the feeling of life safety, or rather, threat; the need to test their existential options, problems with physical as well as mental integrity, well-being, experienced but also expected losses and their consequences, etc. At the same time, as far as these areas are concerned, the causes lie, for example, in the fact that after lung transplantation, one can once again reach for a cigarette and begin to smoke despite the known health risks, the ethical level of this problem, and the numerous warnings of both the professionals and the family. Given the fact that this is our first probe into the area of caring for this very specific group of patients, we have not deviated, in our first instance of conducting a survey of the problem, from the standard quantitative methodology for measuring quality of life because we needed to get an overall picture of lung transplant patients as a specific group. The aim was to conduct a survey of the quality of life of adult patients after lung transplantation in the Czech Republic.
Materials and methods Based on a literature review and after consulting Professor Mareš from the LF UK (FM CU) in Hradec Králové, we selected two questionnaires to measure quality of life: the SF-36 (Short Form Health Survey), which has been used widely in the foreign literature [16]. It contains 36 questions and is not difficult for respondents older than 14 years. It examines eight dimensions of life ( physical functioning, physical limitations, bodily pain, general health, vitality, social functioning, emotional problems, and mental health). The second questionnaire, the EQ-5D-5L (European Quality of Life Questionnaire), which examines six dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression, and current health status of the respondent), was used to validate the information obtained from the respondents using the SF-36. The study included 61 respondents (37 men and 24 women) aged 22–70 years, from two months to thirteen years after lung transplantation. Two respondents had undergone lung retransplantation once (for details, see Tables 2–4). All the respondents are from the transplant centre of the PragueMotol UH. According to the Transplantation Centre of the Motol UH, on 1/10/2012, there were 90 living patients (i.e. 100% from the entire CR) after lung transplantation. Due to the low number of
Table 2 – Distribution of respondents by sex and age.
Male Female
18–30 years
31–45 years
46–60 years
60 years and more
3 1
5 3
16 10
13 10
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Table 3 – Distribution of respondents by gender/type of lung transplantation.
Male Female
Unilateral LT
Bilateral LT
Lobar LT
Heart–lung transplantation
19 12
12 9
3 2
3 1
monitored factors, which means that their quality of life is lower than the average results in the general population, as reported in the SF-36 user manual. According to the user manual, the average results of the SF-36 questionnaire come from the Medical Outcomes Study [17]. The ideal result of the questionnaire in the relevant area is 100, which means no problems with the given area. However, not even the general population reaches this result in any monitored area. Therefore, the values found in our sample of respondents are assessed in relation to the general population, not to a hypothetical ideal state. A summary of the SF-36 questionnaire results and their comparison with the general population are shown in Table 5. In the Physical functioning domain of the SF-36, the responders achieved an average value of 60.38, which can be classified as mild to moderate difficulties with mobility and the performance of activities of daily living (walking down the street, up the stairs, shopping, bathing, and dressing without assistance, etc.). According to the SF-36, in this domain, the average score for the general population is 70.61. In the Physical limitations domain of the SF-36, the achieved average score reached a value of 40.38, which can be described as problems with work or other activities as a result of physical health (e.g. lower job performance, necessity to terminate work because of exhaustion, etc.). According to the SF-36, the average score for the general population is 52.97. In the Emotional problems domain of the SF-36, the achieved average score reached a value of 53.83, which can be interpreted as reduced work performance due to emotional problems, such as depression and anxiety. According to the SF36, the average score for the general population is 65.78. In the Vitality domain of the SF-36, the achieved average score reached a value of 50.73, which can be interpreted as: recurring feelings of exhaustion and fatigue, pessimism, but also experienced states of energy, zest, and feelings of happiness. Although the respondents do not yet feel full of
adult patients after lung transplantation in the Czech Republic, the selection criteria for the sample were drafted broadly with limiting factors kept to a minimum (adult patients at least two months after LT, should have at least a short experience with life after transplantation outside the hospital; operated on in the Czech Republic, and willing to participate in the research study). Of the total number of ninety transplant patients, 85 (i.e. 94.44%) met our selection criteria. In five patients, the time period since lung transplantation was shorter than the two months that we required. The selection of the study respondents was controlled and intentional considering their distinctiveness, and there was an effort to include a maximum number of relevant, accessible respondents. In the end, the research sample consisted of 61 respondents, which represents 68% of the total living population of Czech lung transplant patients, or more precisely, 79% of the number of those who met the study inclusion criteria. Therefore, the sample was sufficiently representative. Patients completed the questionnaire during their outpatient visit to the Motol UH. They were properly instructed concerning voluntary participation in the study; none of them refused anonymous participation in the study.
Results The resulting data on the quality of life in Czech lung transplant patients are according to the SF-36 lower in the
Table 4 – Summary of the number of types of lung transplantation in monitored respondents in time periods. Lobar transplantation
Unilateral LT
Bilateral LT
Heart–lung transplantation
0 0 3 2
13 7 5 6
2 10 4 5
0 0 2 2
2–12 months 13–36 months 37–72 months 73 and more months
Table 5 – Summary of the SF-36 results in individual areas in patients after LT and in the general population. The monitored factor from the SF-36 questionnaire measuring quality of life Physical functioning Physical limitations Emotional problems Vitality Mental health Social functioning Bodily pain General health
The obtained quality of life value in a group of monitored patients after LT
Average quality of life value reported for the general population
60.38 40.38 53.83 50.73 66.15 60.09 56.13 44.03
70.61 52.97 65.78 52.15 70.38 78.77 70.77 56.99
The identified difference in the quality of life in monitored patients after LT 10.23 12.59 11.95 1.42 4.23 18.68 14.64 12.96
Categories with the biggest difference in the quality of life between patients after LT and the general population are labelled grey. Categories for which the difference is the smallest are in bold.
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energy, the transplantation has given them, to a significant degree, their feeling of vitality back. It is one of the dimensions of quality of life that the patients from our sample rated quite highly. According to the SF-36, the average score for the general population is 52.15, which is not a high score, and it shows that even the general population feels relatively not very energetic – it is also quite tired and exhausted. In the Mental health domain of the SF-36, the achieved average score reached a value of 66.15, which can be interpreted as: occasional situations where the mental and health condition limits social life and activity. According to the SF-36, the average score for the general population is 70.38. Upon deeper reflection, we get to the problem of simultaneous decoding of the content of the statements in the area of emotional problems and the area of mental health. The fact is that our respondents have admitted to emotional problems (compared with the general population, they admitted, in this area, to quality of life that was worse by 11.95 points); however, they have presented the area of mental health as one of the least affected areas of quality of life (compared with the general population, they admitted, in this area, to quality of life that was worse by only 4.23 points). In the Social functioning domain, the respondents' average score reached a value of 60.09, which can be interpreted as: a reduction in social activities and obstacles arise due to health and emotional problems. It is likely that close relationships with family and friends and in the place of residence, etc. will be maintained. However, relationships and functioning options in work and leisure partnerships, etc. will be significantly limited. According to the SF-36, the average score for the general population is 78.77. Our respondents after LT presented this quality of life factor as significantly reduced. In the Bodily pain domain of the SF-36, the average score reached a value of 56.13, which can be commented on as indicating the presence of pain. According to the SF-36, the average score for the general population is 70.77. This factor of quality of life in patients after transplantation is rated as the second lowest – patients have pain and pain is limiting. In the General health domain of the SF-36, the average score reached a value of 44.03, which can be interpreted as: in general, people after LT evaluate their health status as worse – perhaps in the context of their situation as such (actually, after transplantation, their status is a state after a radical and last possible treatment option), or as more vulnerable as a result of long-term immunosuppression, etc. (this cannot be deduced
from the questionnaire). According to the SF-36, the average score for the general population is 56.99. In summary, it can be stated that according to the SF-36, the most significant differences in the quality of life of patients after LT in relation to the general population were detected in the items ‘‘social functioning’’ (compared with the general population, the lung transplant patients' quality of life score was lower by 18.68 points) and ‘‘bodily pain’’ (compared with the general population, the lung transplant patients' quality of life score was lower by 14.64 points). The smallest differences in relation to the general population and thus a relatively high quality of life were detected in the items ‘‘vitality’’ (compared with the general population, the lung transplant patients' quality of life score in the area of vitality was lower by only 1.42 points) and ‘‘mental health’’ (compared with the general population, the quality of life score in the area of mental health was lower by only 4.23 points. However, for this category, it is necessary to consider the simultaneous result in the area of emotional problems, where the LT patients demonstrated lower quality of life by 11.95 points compared with the general population. From this point of view, it is difficult to evaluate the quantitative result of the general assessment of mental health). The last SF-36 item was a question comparing health status now and a year ago (see results in Table 6).
Respondents in the period of 2–12 months after LT Ten (66.66%) of the respondents indicated that their health is much better than a year ago and 2 (13.3%) reported slightly better health than a year ago. Of all the patient categories, this category reported the best general assessment of their current health condition. (The category included only patients after unilateral and bilateral LT.)
Respondents in the period of 13–36 months after LT Eleven (64.70%) of the respondents indicated that their health is about the same as a year ago. (The category included only patients after unilateral and bilateral LT.)
Respondents in the period of 37–72 months after LT Eight (57.14%) of the respondents indicated that their health is about the same as a year ago; however, 22% indicated that
Table 6 – Expressions of patients after LT concerning their current health status according to the SF-36. P SF-36 Much better health Somewhat better health Health is about the same Health is somewhat worse Health is much worse than a year ago
2–12 months Pafter LT abs. (f.) ( /cumul. [cumul.] f.) 10 2 1 2 0
(66.66%/10) (13.33%/12) (6.66%/13) (13.33%/15)
13–36 months after PLT abs. f. ( /cumul. f.) 2 2 11 2 0
(11.76%/2) (11.76%/4) (64.70%/15) (11.76%/17)
37–72 months after P LT abs. f. ( /cumul. f.) 1 2 8 2 1
(7.14%/1) (14.28%/3) (57.14%/11) (14.28%/13) (7.14%/14)
73 and more months after P LT abs. f. ( /cumul. f.) 2 0 8 4 1
(13.33%/2) (53.22%/10) (26.66%/14) (6.66%/15)
The most frequent categories of expressions in a given time frame and a trend of deteriorating feeling of the quality of own health care are labelled grey.
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Table 7 – Statements of patients after LT concerning their health status, using the EuroQol questionnaire. 2–12 months after LT
13–36 months after LT
37–72 months after LT
73 and more months after LT
12 (80%)
15 (88.23%)
13 (92.85%)
13 (86.66%)
66.87
77.16
60.1
75
EuroQol – what is the percentage of patients who indicate a problem in one or more dimensions of the questionnaire EuroQol How do they feel now? 100 = best possible health status, 0 = worst health status The most problematic categories are labelled grey.
their health is somewhat or much worse than a year ago. The categories ‘‘much better’’ and ‘‘somewhat better’’ generated the same values as the categories ‘‘somewhat worse’’ and ‘‘much worse’’ than a year ago.
status. The score of 100 represents the best possible health status and the score of 0 represents the worst possible health status. The scores have been structured according to the time period elapsed since the LT:
Respondents in the period of 73 and more months after LT
– in the period spanning 3–12 months after LT, the score is 66.87; – in the period spanning 13–36 months after LT, the score is 77.16; – in the period spanning 37–72 months after LT, the score is 60.1; – in the period spanning 73 and more months after LT, the score is 75 (see Table 7).
Eight (53.22%) of the respondents indicated that their health is about the same; however, already more than 33% indicated that their health is ‘‘somewhat’’ worse and ‘‘much worse’’ than a year ago. Nonetheless, the ratings ‘‘much better’’ and ‘‘about the same’’ compared to a year ago remain more frequent than the ratings ‘‘somewhat worse’’ and ‘‘much worse’’. Using the EuroQol questionnaire, it was found that: – in the period spanning 2–12 months after LT: 12 (80%) of the respondents exhibited problems in one or more dimensions of the EuroQol questionnaire (only respondents after unilateral or bilateral LT were represented); – in the period spanning 13–16 months after LT: 15 (88.23%) of the respondents exhibited problems in one or more dimensions of the EuroQol questionnaire (only respondents after unilateral or bilateral LT were represented); – in the period spanning 37–72 months after LT: 13 (92.85%) of the respondents exhibited problems in one or more dimensions of the EuroQol questionnaire (the represented patients underwent lobar LT, unilateral as well as bilateral LT, and heart–lung transplantation); – in the period spanning 73 and more months after LT: 13 (86.66%) of the respondents exhibited problems in one or more dimensions of the EuroQol questionnaire (the represented patients underwent lobar LT, unilateral as well as bilateral LT, and heart–lung transplantation) – as described in detail in Table 7. According to the EuroQol (EQ-5D-5L), the results of the investigation in our group of respondents have demonstrated, in a noticeable way, the worst score in the area of pain/ discomfort (score = 2.76), indicating medium problems with pain/discomfort (for problems, the worst possible value is 5). Other areas with the greatest problems are anxiety/depression (score = 2.15) and mobility (score = 2.11). All values fluctuate at the medium level; no dimension has reached extreme values. On the contrary, the best results have been obtained for the following dimensions: usual activities (score = 1.5) and self-care (score = 1.8). The last item of the EuroQol questionnaire was a question on the respondents' current opinion concerning their health
Discussion According to the summary of the results of both questionnaires, the monitored lung transplant patients have exhibited the worst results in the quality of life in the following areas: social functioning, physical limitations/mobility, bodily pain/discomfort, and emotional problems/anxiety/depression [18, pp. 28–43]. When reflecting on the quality of life of these patents, it is necessary to include: – their age – our group included 49 respondents aged 46–70 years who possibly could have more health problems and declining physical and other abilities and skills, increased pain and the like due to age, not only due to LT, and only 12 respondents aged 18–45 years. For this age group, the problems generated will probably be from the area of health rather than age. – survival time – statistics for patients after LT – it is clear that if 50–55% of patients survive longer than 5 years and only 25% of patients longer than 10 years, the problems of those who do not survive this period must be reflected in the results of the quality of life measurements in a given category. Subsequently, it is logical that in the category over 37 months after transplantation, a reduction in the quality of life must manifest itself due to the deteriorating health status in a significant portion of the patients. Improving long-term quality of life in a group of patients after lung transplantation will, to some extent, depend on innovations in therapy. However, we do not know to what extent it would be possible to increase quality of life because of a lower incidence of complications and problems that can be affected by long-term nursing care while providing support or
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accompaniment. Nursing has an opportunity to work with the patients' problems for which the patients have reported a reduced quality of life (social functioning, bodily pain, physical limitations, emotional problems as well as physical functioning). According to the results of an Austrian study by authors Smeritschnig et al. [14], who used the SF-36 questionnaire, their transplant respondents exhibited, in the areas of mental health and vitality, quality of life similar to the healthy population. However, in the other dimensions, their scores were significantly lower. In our research study, we have obtained very similar results. The areas of vitality and mental health had values the closest to the general population as well, and in the other dimensions of our study, the global score has been markedly lower than the given average in the ‘‘User Guide’’ for the general population. From the results, comparing how the respondents have perceived their health status compared to a year ago, it emerges that the patients are faring somewhat better than the previous year or are faring the same – especially in the first 36 months after LT. Our results are similar. In a research study carried out in Canada (Montreal, Quebec), Vasiliadis et al. [12] obtained higher values in all the dimensions of the SF-36 compared with our study. We think this was caused especially by the composition of the respondents – their sample included only patients up to 5 years after LT whereas our sample has included patients up to 13 years after LT. The period starting about 4 years after transplantation appears to be the statistical beginning of deteriorating quality of life of patients after LT. The Canadian authors have had similar results in the most reduced dimensions of quality of life: physical limitation, general health, and bodily pain. We differed in the dimension of social functioning. According to Rutherford et al. [19] of Great Britain, their respondents were patients over 10 years after LT, and as expected, compared with normative data of the general population, they had significantly lower scores in all the parameters measured by the SF-36, except mental health and bodily pain. Our results differ in the dimension of physical pain, where our quality of life scores have been lower. The differences can be attributed to the composition of the respondents. The Norwegian authors Stavem et al. [20] have reported SF36 scores for respondents after lung transplantation that were significantly better in all the dimensions except bodily pain, compared with respondents prior to lung transplantation, with whom the values were compared. In comparison with the results of the Norwegian study, our respondents exhibited these most problematic dimensions of quality of life: emotional problems and social functioning. Our results are similar to the results of these authors in the mental health and physical functioning dimensions. The results obtained through the EQ-5D questionnaire can be discussed only in the context of the study from the UK, by authors Anyanwu et al. [15] which showed measurement results for individual lung transplantation types. Their sample included 255 patients after lung transplantation. In view of the small sample size in our study, we focused on transplanted patients as a whole. In addition, their study had a different time structure of categories of respondents according to the period after LT than we had in our study. However, the most important difference is the interpretation of results in terms of the intensity of occurrence of problems in the individual
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dimensions. The foreign study has shown only an extreme level of the exhibited problems; our study has shown all the detected problems. In terms of the structure of the problems, the results are very similar. The respondents of this British study had the greatest difficulty in these dimensions: daily activities, pain, and anxiety/depression. Our respondents have reported the greatest difficulty in these dimensions: pain/discomfort, anxiety/depression and mobility. None of the studies referred to mentioned retransplantation in their respondents. We believe that this group of patients would deserve its own investigation. A statistical correlation of results with foreign studies was not conducted because the studies on quality of life are not compatible in terms of sample respondents. If this is about the time after LT, they have included neither socio-cultural specifics nor the system nor contexts of health care and nursing care. The results of our study are an introductory probe at a general level concerning the degree of quality of life in patients after LT in relation to the quality of life in the general population.
Recommendations for Czech nursing In nursing practice, we see space for improving the quality of life in patients after lung transplantation by applying more effective methods of the nurse's work with the patient. Nowadays, it is in the scope of the nurse's work to implement patient education (education should encompass cognitive, affective, and behavioural components). At the present time, nurses are more likely to provide patients with information – they work, to a large extent, with the cognitive component (providing information). Conversely, work with the affective component is insufficient (systematic work with patients' emotions is lacking, and their attitudes are not affected) and so is work with the behavioural component – performatory – (they do not learn how to cope practically with challenges that will need to be addressed). Lung transplant patients are a very specific group of patients with a serious health condition, expensive treatment, and uncertain prognosis. They should receive appropriate long-term care and attention by nursing as well. Foreign literature describes the concept of nurse–patient supervision. It is a support method that provides not only space for education (and reeducation), but also a safe environment for patients to reveal their problems while coping with the treatment regimen, self-monitoring, normal daily life, anxiety attacks, etc. It is a method suitable for work with the chronically and terminally ill. Of their own accord, they initiate and bring issues to meetings with the nurse – topics they want to discuss and have a ‘‘chat’’ about. Therefore, it is not the health care professional who defines the content of the meetings. Instead, the patient is the one who decides what will be discussed. It is necessary to educate nurses – ideally, master's-prepared nurses (specialists) – in the area of reflective practice, listening, and developing nursing therapeutic alliances between nurses and patients as well as their families so that nurses can begin to develop the principles of supportive supervisory work with the patient. Moreover, they need further education in various methods and techniques of interactive work with the client (the techniques used in social
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work, psychotherapy, or androdidactics can be inspirational). The current education of nurses in the area of health care education is totally inadequate for such a type of long-term care. Moreover, it is necessary to consider a different work arrangement and provide specialized nurses an opportunity to work, during their working hours, with clients after lung transplantation individually (partly in personal meetings, and also by taking advantage of phone and electronic communication). For this type of long-term care, it would be appropriate to use, for example, such type of relational care. Patients would obtain a professional they would trust, with whom they would want to collaborate, who would support them on a long-term basis, and with whom they could talk about their problems at any time, without having to wait for a scheduled physician office visit. Supportive supervision can assist patients as they deal with issues concerning their social functioning and issues in the area of safety and security, manage pain, physical limitations, etc. more effectively. Every time, it can do so in a very specific way which really suits a given patient. Such a type of long-term nursing care that continuously provides comfort and enhances the patient's quality of life could help to reduce the cost of treating complications, reduce the need for repeated hospitalizations, and improve the quality of life of lung transplant patients and their families. Such a model requires: a concept of long-term nursing care, a specification of the nurse's scope of practice in the area of long-term care, an extension of the statute of a given workplace, further education of nurse-specialists, etc.
Conclusion Compared with the general population, the quality of life in Czech lung transplant patients is lower in all the dimensions of the SF-36. According to the SF-36 questionnaire, our adult lung transplant patients have exhibited the most reduced level of quality of life in the following dimensions: social functioning, bodily pain, general health, physical limitations, and emotional problems. Better results, i.e. a more satisfactory level of quality of life (a small difference in relation to the general population), have been obtained in the dimension of vitality and mental health. According to the EQ-5D-5L questionnaire of quality of life, patients after lung transplantation have exhibited problems in the following areas: pain/discomfort, anxiety/depression, and mobility, which corresponds to the results of the SF-36 questionnaire. The best results have been detected in the normal activities and self-care dimensions. In the area of overall assessment of their own health, it is possible to comment on the results as follows: the more time has elapsed since transplantation, the greater the reduction in the lung transplant patients' positive opinion concerning their own health. For the development of nursing care, it is necessary to examine this specific group of patients in more detail concerning their issues and needs in order to develop, in a targeted way, a system of longterm nursing care of such patients.
Conflict of interest No conflict of interest.
Acknowledgement The article is dedicated to the specific research of the Institute of Nursing, FVP (FPP), SLU (SU) in Opava, IGS 15/2013.
references
[1] Pavlátová E. Zdravotnické noviny. Praha: Mladá fronta; 2010, Available from http://zdravi.e15.cz/rozhovory/ predstavujeme/445748 [cit. 12.11.10]. [2] Musil J, Petřík F, Trefný M. Pneumologie. 1. vyd. Praha: Nakladatelství Karolinum; 2007. [3] Banner N, Polak J, Yacoub M. Lung transplantation 1. vyd. Cambridge: Cambridge University Press; 2003. [4] Řehák F, Šmat V. Chirurgie plic a mediastina. Praha: Avicenum; 1986. p. 273. [5] Příručka pro pacienty. Transplantace plic, vydáno transplantačním týmem pro edukaci pacientů před transplantací plic. Praha: FN Motol; 2010. p. 40. [6] Koordinační Středisko Transplantací, Praha [online]; 2005, Available from http://www.kst.cz/web/home.php [cit. 11.12.12]. [7] Krofta K. Pneumologie. Praha: Triton; 2005. [8] Olišarová V, Dolák F, Tóthová V. Kvalita života jako součást ošetřovatelství. Kontakt 2013;XV1:14–21. [9] Gurková E. Hodnocení kvality života: Pro klinickou praxi a ošetřovatelský výzkum 1. vyd. Praha: Grada Publishing; 2011. [10] Řehulková O, Řehulka E, Blatný M, Mareš J. Kvalita života v souvislostech zdraví a nemoci. Brno: MSD; 2008. [11] Kuběnová M. Kvalita života pacientů před transplantací plic [online]. Vedoucí práce: Bužgová, R. Ostrava.[Bakalářská práce] Ostravská univerzita, Lékařská fakulta; 2012, Available from https://theses.cz/id/icxrre/ [cit. 24.04.12]. [12] Vasiliadis HM, Collet JP, Poirier Ch. Health-related qualityof-life determinants in lung transplantation. Journal of Heart and Lung Transplantation 2006;25(2):226–33. [13] Kugler Ch, Strueber M, Tegtbur U, Niedermeyer J, Haverich A. Quality of life 1 year after lung transplantation. Progress in Transplantation 2004;14(4):331–6. [14] Smeritschnig B, Jaksch P, Kocher A, Seebacher G, Aigner C, Mazhar S, et al. Quality of life after lung transplantation: a cross-sectional study. Journal of Heart and Lung Transplantation 2005;24(4):474–80. [15] Anyanwu A, McGuire A, Rogers C, Murday A. Assessment of quality of life in lung transplantation using a simple generic tool. Thorax 2001;56(3):218–22. Available from http://thorax. bmj.com [cit. 11.12.12]. [16] Ware EJ. SF-36 health survey update. Quality metric health outcomes solutions Lincoln [online]; 2007, Available from http://www.sf-36.org [cit. 12.11.10]. [17] Medical Outcomes Study. 36-Item short form survey scoring instructions [online]; 2010, Available from http://www.rand.org, last modified September 15 [cit. 11.12.12]. [18] Nol J. Kvalita života pacientů po transplantaci plic. Vedoucí práce: Špirudová L. Opava.[Bakalářská práce] FVP, ÚO; 2012. [19] Rutherford RM, Fischer AJ, Hilton C, Forty J, Hasan A, Gould FK, et al. Functional status and quality of life in patients surviving 10 years after lung transplantation. American Journal of Transplantation 2005;5(5):1099–104. [20] Stavem K, Bjørtuft Ø, Lund MB, Kongshaug K, Geiran O, Boe J. Health-related quality of life in lung transplant candidates and recipients. Respiration 2000;67(2):159–65.
kontakt 16 (2014) e9–e16
Available online at www.sciencedirect.com
ScienceDirect journal homepage: http://www.elsevier.com/locate/kontakt
Original research article
Quality of life of patients after lung transplantation Lenka Špirudová a,*, Jaroslav Nol b a b
Silesian University in Opava, Faculty of Public Policy, Institute of Nursing, Czech Republic Charles University in Prague, Prague-Motol University Hospital, Pneumology Clinic, Czech Republic
article info
abstract
Article history:
The study is the first tentative nursing probe into the quality of life of Czech patients after
Received 29 April 2013
lung transplantation. The main objective of the study is to determine the quality of life in
Accepted 21 December 2013
adult patients after lung transplantation in the Czech Republic and point out ways in which
Available online 20 February 2014
nursing can contribute to improving the quality of life of these patients.
Keywords:
examines eight dimensions of the quality of life, and the EQ-5D-5L, which examines six
Quality of life
dimensions of the quality of life. In total, the sample of respondents comprised of 61 patients,
The study used a combination of two standardized questionnaires: the SF-36, which
Patient
representing 67.80% of the total population of living adult patients who had ever undergone
Lung transplantation
lung transplantation in the Czech Republic. The results of the study correspond to published
Nursing
information on the progress of the quality of life in patients after lung transplantation, namely:
Education
after lung transplantation, the quality of life is significantly improved (peak improvement
Support
occurs in the period between the 13th and 36th month); however, over time, it deteriorates again. In our study, deterioration in overall health was recorded as an increasing trend from about the fourth year after transplantation. According to the SF-36 and EQ-5D-5L questionnaires, the studied sample of lung transplant patients exhibited the most significant variations in the quality of life, compared with the general population, in the following areas: social functioning, bodily pain, physical limitations – mobility, and emotional problems such as anxiety or depression. Based on the results, a new methodology is proposed to nurse-specialists concerning continuous long-term support work with lung transplant patients, which could be effective and could bring relief to patients in areas they assess as difficult to manage. # 2014 Faculty of Health and Social Studies of University of South Bohemia in České Budějovice. Published by Elsevier Urban & Partner Sp. z o.o. All rights reserved.
Introduction Lung transplantation is a serious interference with the patient's life, which on one hand brings hope for a better life without a number of restrictions; on the other hand, it is necessary to deal with other issues that the chronically ill
patient so far has not become familiar with (e.g. the need for prolonged immunosuppression; having a foreign organ inside your body as an integral part of one's self instead of oxygen equipment, and other issues). For many patients (children and adults) with a devastating lung disease (see Table 1), lung transplantation is the last treatment option. In the Czech Republic, this highly specialized treatment is
* Corresponding author at: Slezská univerzita, Fakulta veřejných politik, Ústav ošetřovatelství, Hauerova 728/4, 746 01 Opava, Czech Republic. E-mail address: [email protected] (L. Špirudová). http://dx.doi.org/10.1016/j.kontakt.2013.12.002 1212-4117/# 2014 Faculty of Health and Social Studies of University of South Bohemia in České Budějovice. Published by Elsevier Urban & Partner Sp. z o.o. All rights reserved.
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Table 1 – Summary of medical diagnoses that were the cause for lung transplantation in patients at the Motol FN (UH) until 1/10/2012.
performed only at the University Hospital in Prague in Motol [1].
According to statistics, the need for lung transplantation in the Czech Republic ranges from 3 to 5 per million inhabitants per year, 70–80% of patients live for one year after lung transplantation, 50–55% of patient live for at least five years, and 25% of the operated patients live for more than 10 years after the surgery [6]. Survival time is determined mainly by primary diagnosis and the general state of the organism. In the Czech Republic, around 40–50 patients are on the waiting list. About 20 transplants are performed annually. The reason for such a ‘‘small’’ number of lung transplants is the small number of suitable lung donors. Several types of lung transplantation are performed: unilateral lung transplantation is the most common. It is particularly suitable for the elderly and for those who also suffer from other associated diseases. It is performed in patients with chronic obstructive pulmonary disease (COPD), idiopathic pulmonary fibrosis (IPF), and sarcoidosis. Bilateral lung transplantation – is required in diseases where there is recurrent chronic inflammation, most commonly in patients with cystic fibrosis (CF). Living-donor lobar lung transplantation – is rarely indicated in paediatric patients. One lung lobe, most commonly from one of the parents, is transmitted to the affected area. The most extensive and major procedure is heart–lung transplantation [7, p. 261].
Lung transplantation
Quality of life
Lung transplantation (lung transplantation – LuTX [LT]) is indicated for patients in the terminal stages of lung disease, when the estimated survival time is 1–1.5 years, after all conservative treatment options have been exhausted, and the health status continues to deteriorate [2, p. 234]. This method brings a chance of prolonging life and improving its quality to patients with an otherwise incurable and frequently fatal disease [3, p. 21]. ‘‘Historically, the first lung transplant was performed by James Hardy and colleagues in 1963 in the USA, when he decided to remove and replace the left lung of a 58-year-old man suffering from cancer and chronic glomerulonephritis. After surgery, the patient underwent irradiation using cobalt and received immunosuppressive therapy with antimetabolites (Imuran). He died on the eighteenth day from kidney failure, although, in addition, his autopsy revealed a suture fistula in the unhealed bronchus’’ [4, p. 147]. ‘‘Initially, these operations did not produce good results; therefore, they were performed no more than sporadically. Only in the 1980s, the development of immunosuppressive therapy and the introduction of cyclosporine led to further development of transplantation medicine. Before the development of cyclosporine, immunosuppression consisted in the administration of large doses of corticosteroids, which worsened wound healing and led to a number of infectious complications, which killed the patients in the first six months after transplantation’’ [2, p. 234]. The first single lung transplantation in the Czech Republic was performed in December 1997, and transplantation of both lungs was performed a year later [2, p. 23]. By the end of 2007, a total of 28,488 lung transplants had been performed worldwide. At present, approximately 2700 such procedures are performed annually in one hundred and fifty specialized centres [5, p. 11]. In the Czech Republic, 14 lung transplants were performed from 1/1/2012 to 30/9/ 2012.
Quality of life has many definitions; however, they all basically attempt to define elementary life satisfaction as a multidimensional existential phenomenon. The work of Olišarová et al. [8, pp. 14–21] provides both an overview of the definitions and an overview of the studies completed on the quality of life in relation to various clinical conditions in the Czech Republic since 2000. ‘‘Research on the quality of life in health care was initiated in the 1970s and was generally potentiated by two factors. The first, pharmaco-economic factor was the need to assess the financial cost and effectiveness of treatment (due to the increasing pressure to reduce costs) as well as the need to identify priorities in the event of allocation of resources. The second factor was an effort to comprehensively document the clinical success of treatment, or more precisely, of therapeutic interventions on the patient's health status’’ [9, p. 41]. This fact has led to the emergence of the so-called concept of HRQoL (Health-Related Quality of Life). ‘‘In general, it can be said that health-related quality of life is primarily concerned with professionally provided health care, and it becomes an important indicator of its outcome’’ [10, p. 6]. A number of standardized questionnaires are available for measuring quality of life; however, there is no universal instrument that would be generally acceptable. In an attached summary, the work of Olišarová, Dolák, Tóthová [8, pp. 14–21] has included studies on the quality of life in the area of transplantology as well; however, these studies only examined the quality of life in haematological patients (from 2000 to 2010). So far, no other studies from the area of transplantology have been registered in the Czech Information System for the collection, processing, and use of the results of research, development, and innovation (IsVaVaI [The R&D Information System]) since the year 2000. Therefore, from this perspective, our study has probably been the first tentative probe to assess Czech patients' quality of life after lung transplantation.
Medical diagnosis as an indication for lung transplantation in the patient
Absolute frequency
Relative frequency
CF – cystic fibrosis CHOPN (COPD) – chronic obstructive pulmonary disease PF – pulmonary fibrosis KFA (CFA) – cryptogenic fibrosing alveolitis EAA – extrinsic allergic alveolitis LAM – lymphangioleiomyomatosis IPAH – idiopathic pulmonary arterial hypertension PCD – primary ciliary dyskinesia CPFE – combined fibrosis and emphysema syndrome
16 40
17.80 44.44
14 9
15.55 10.00
3 5 1
3.33 5.55 1.11
1 1
1.11 1.11
Total
90
100.00%
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Literature review We worked using the evidence based practice method. By means of the PICO-T method, we inferred clinical questions and strings of key terms with Boolean operators for searching the EBSCO and Google Scholar databases: 1. The impact of nursing care on the quality of life in adult patients after lung transplantation. ‘‘nursing care’’ and ‘‘adult’’ and ‘‘lung transplantation’’ and ‘‘quality of life’’. 2. Education of lung transplant patients on the treatment regimen and quality of life: ‘‘education’’ and ‘‘patient’’ and ‘‘lung transplantation’’ and ‘‘treatment regimen’’ and ‘‘quality of life’’. We found six foreign studies and one Czech study, which, however, did not examine the quality of life in patients after lung transplantation, but before lung transplantation – i.e. in those who had been placed on a waiting list [11]. Most frequently, the studies used the SF-36 questionnaire, which was supplemented in some of the studies, even by the SGRQ (‘‘Saint George's Respiratory Questionnaire’’) or questionnaires for measuring depression and anxiety. Other instruments for measuring quality of life that we detected included the EuroQol EQ-5D-5L and the WHOQOL-BREF. It was not possible to conduct a meta-analysis of the identified studies because in addition to variations in the instruments used for measuring quality of life, there have been significant differences in the samples of respondents as well as in the ways of presenting the results. For the purposes of our own study, these findings were important: the selected measurement instrument SF-36 had been chosen correctly. The published results that have given evidence of a truly higher quality of life, in the studied dimensions, in patients after lung transplantation as opposed to before transplantation, are of significance; however, it is possible to expect persistent worsening in terms of pain and reduced physical fitness [12]. Such problems may develop, to a minimum extent, also in patients discharged to home care after transplantation, although it appears that the most significant improvements in the quality of life occur within 6 months of surgery [13]. Even in these patients, their quality of life can be affected by anxiety and depression; however, at other times, their vitality and mental health may not deviate significantly from the general population. Nonetheless, in a study conducted by Austrian researchers, the patients exhibited a lower quality of life in all dimensions compared with the general population, despite the good results of transplantation and an enhanced quality of life [14]. A study by Anyanwu et al. [15] from Great Britain mentions that within 6 months of transplantation, one or more extreme problems occur in 25% of single lung recipients, 7% of bilateral lung recipients, and 14% of heart–lung recipients. However, more than 36 months after lung transplantation, as many as 90% of patients after single LT, 61% of patients after bilateral lung transplantation, and 43% of patients after heart–lung transplantation reported extreme problems in one or more dimensions. Lung transplantation is a standard way of dealing with the final stages of severe cardiopulmonary diseases, but it is not a
problem-free treatment with a long-term perspective for everyone. This is an important factor that must be accepted also in the nursing care management of these patients, who fall into the category of long-term patients. Standardized questionnaires for measuring the quality of life are designed for mass measurements; it is not possible to identify, from within the monitored categories, any particular problems of a specific patient – an individual – such as the feeling of life safety, or rather, threat; the need to test their existential options, problems with physical as well as mental integrity, well-being, experienced but also expected losses and their consequences, etc. At the same time, as far as these areas are concerned, the causes lie, for example, in the fact that after lung transplantation, one can once again reach for a cigarette and begin to smoke despite the known health risks, the ethical level of this problem, and the numerous warnings of both the professionals and the family. Given the fact that this is our first probe into the area of caring for this very specific group of patients, we have not deviated, in our first instance of conducting a survey of the problem, from the standard quantitative methodology for measuring quality of life because we needed to get an overall picture of lung transplant patients as a specific group. The aim was to conduct a survey of the quality of life of adult patients after lung transplantation in the Czech Republic.
Materials and methods Based on a literature review and after consulting Professor Mareš from the LF UK (FM CU) in Hradec Králové, we selected two questionnaires to measure quality of life: the SF-36 (Short Form Health Survey), which has been used widely in the foreign literature [16]. It contains 36 questions and is not difficult for respondents older than 14 years. It examines eight dimensions of life ( physical functioning, physical limitations, bodily pain, general health, vitality, social functioning, emotional problems, and mental health). The second questionnaire, the EQ-5D-5L (European Quality of Life Questionnaire), which examines six dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression, and current health status of the respondent), was used to validate the information obtained from the respondents using the SF-36. The study included 61 respondents (37 men and 24 women) aged 22–70 years, from two months to thirteen years after lung transplantation. Two respondents had undergone lung retransplantation once (for details, see Tables 2–4). All the respondents are from the transplant centre of the PragueMotol UH. According to the Transplantation Centre of the Motol UH, on 1/10/2012, there were 90 living patients (i.e. 100% from the entire CR) after lung transplantation. Due to the low number of
Table 2 – Distribution of respondents by sex and age.
Male Female
18–30 years
31–45 years
46–60 years
60 years and more
3 1
5 3
16 10
13 10
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Table 3 – Distribution of respondents by gender/type of lung transplantation.
Male Female
Unilateral LT
Bilateral LT
Lobar LT
Heart–lung transplantation
19 12
12 9
3 2
3 1
monitored factors, which means that their quality of life is lower than the average results in the general population, as reported in the SF-36 user manual. According to the user manual, the average results of the SF-36 questionnaire come from the Medical Outcomes Study [17]. The ideal result of the questionnaire in the relevant area is 100, which means no problems with the given area. However, not even the general population reaches this result in any monitored area. Therefore, the values found in our sample of respondents are assessed in relation to the general population, not to a hypothetical ideal state. A summary of the SF-36 questionnaire results and their comparison with the general population are shown in Table 5. In the Physical functioning domain of the SF-36, the responders achieved an average value of 60.38, which can be classified as mild to moderate difficulties with mobility and the performance of activities of daily living (walking down the street, up the stairs, shopping, bathing, and dressing without assistance, etc.). According to the SF-36, in this domain, the average score for the general population is 70.61. In the Physical limitations domain of the SF-36, the achieved average score reached a value of 40.38, which can be described as problems with work or other activities as a result of physical health (e.g. lower job performance, necessity to terminate work because of exhaustion, etc.). According to the SF-36, the average score for the general population is 52.97. In the Emotional problems domain of the SF-36, the achieved average score reached a value of 53.83, which can be interpreted as reduced work performance due to emotional problems, such as depression and anxiety. According to the SF36, the average score for the general population is 65.78. In the Vitality domain of the SF-36, the achieved average score reached a value of 50.73, which can be interpreted as: recurring feelings of exhaustion and fatigue, pessimism, but also experienced states of energy, zest, and feelings of happiness. Although the respondents do not yet feel full of
adult patients after lung transplantation in the Czech Republic, the selection criteria for the sample were drafted broadly with limiting factors kept to a minimum (adult patients at least two months after LT, should have at least a short experience with life after transplantation outside the hospital; operated on in the Czech Republic, and willing to participate in the research study). Of the total number of ninety transplant patients, 85 (i.e. 94.44%) met our selection criteria. In five patients, the time period since lung transplantation was shorter than the two months that we required. The selection of the study respondents was controlled and intentional considering their distinctiveness, and there was an effort to include a maximum number of relevant, accessible respondents. In the end, the research sample consisted of 61 respondents, which represents 68% of the total living population of Czech lung transplant patients, or more precisely, 79% of the number of those who met the study inclusion criteria. Therefore, the sample was sufficiently representative. Patients completed the questionnaire during their outpatient visit to the Motol UH. They were properly instructed concerning voluntary participation in the study; none of them refused anonymous participation in the study.
Results The resulting data on the quality of life in Czech lung transplant patients are according to the SF-36 lower in the
Table 4 – Summary of the number of types of lung transplantation in monitored respondents in time periods. Lobar transplantation
Unilateral LT
Bilateral LT
Heart–lung transplantation
0 0 3 2
13 7 5 6
2 10 4 5
0 0 2 2
2–12 months 13–36 months 37–72 months 73 and more months
Table 5 – Summary of the SF-36 results in individual areas in patients after LT and in the general population. The monitored factor from the SF-36 questionnaire measuring quality of life Physical functioning Physical limitations Emotional problems Vitality Mental health Social functioning Bodily pain General health
The obtained quality of life value in a group of monitored patients after LT
Average quality of life value reported for the general population
60.38 40.38 53.83 50.73 66.15 60.09 56.13 44.03
70.61 52.97 65.78 52.15 70.38 78.77 70.77 56.99
The identified difference in the quality of life in monitored patients after LT 10.23 12.59 11.95 1.42 4.23 18.68 14.64 12.96
Categories with the biggest difference in the quality of life between patients after LT and the general population are labelled grey. Categories for which the difference is the smallest are in bold.
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energy, the transplantation has given them, to a significant degree, their feeling of vitality back. It is one of the dimensions of quality of life that the patients from our sample rated quite highly. According to the SF-36, the average score for the general population is 52.15, which is not a high score, and it shows that even the general population feels relatively not very energetic – it is also quite tired and exhausted. In the Mental health domain of the SF-36, the achieved average score reached a value of 66.15, which can be interpreted as: occasional situations where the mental and health condition limits social life and activity. According to the SF-36, the average score for the general population is 70.38. Upon deeper reflection, we get to the problem of simultaneous decoding of the content of the statements in the area of emotional problems and the area of mental health. The fact is that our respondents have admitted to emotional problems (compared with the general population, they admitted, in this area, to quality of life that was worse by 11.95 points); however, they have presented the area of mental health as one of the least affected areas of quality of life (compared with the general population, they admitted, in this area, to quality of life that was worse by only 4.23 points). In the Social functioning domain, the respondents' average score reached a value of 60.09, which can be interpreted as: a reduction in social activities and obstacles arise due to health and emotional problems. It is likely that close relationships with family and friends and in the place of residence, etc. will be maintained. However, relationships and functioning options in work and leisure partnerships, etc. will be significantly limited. According to the SF-36, the average score for the general population is 78.77. Our respondents after LT presented this quality of life factor as significantly reduced. In the Bodily pain domain of the SF-36, the average score reached a value of 56.13, which can be commented on as indicating the presence of pain. According to the SF-36, the average score for the general population is 70.77. This factor of quality of life in patients after transplantation is rated as the second lowest – patients have pain and pain is limiting. In the General health domain of the SF-36, the average score reached a value of 44.03, which can be interpreted as: in general, people after LT evaluate their health status as worse – perhaps in the context of their situation as such (actually, after transplantation, their status is a state after a radical and last possible treatment option), or as more vulnerable as a result of long-term immunosuppression, etc. (this cannot be deduced
from the questionnaire). According to the SF-36, the average score for the general population is 56.99. In summary, it can be stated that according to the SF-36, the most significant differences in the quality of life of patients after LT in relation to the general population were detected in the items ‘‘social functioning’’ (compared with the general population, the lung transplant patients' quality of life score was lower by 18.68 points) and ‘‘bodily pain’’ (compared with the general population, the lung transplant patients' quality of life score was lower by 14.64 points). The smallest differences in relation to the general population and thus a relatively high quality of life were detected in the items ‘‘vitality’’ (compared with the general population, the lung transplant patients' quality of life score in the area of vitality was lower by only 1.42 points) and ‘‘mental health’’ (compared with the general population, the quality of life score in the area of mental health was lower by only 4.23 points. However, for this category, it is necessary to consider the simultaneous result in the area of emotional problems, where the LT patients demonstrated lower quality of life by 11.95 points compared with the general population. From this point of view, it is difficult to evaluate the quantitative result of the general assessment of mental health). The last SF-36 item was a question comparing health status now and a year ago (see results in Table 6).
Respondents in the period of 2–12 months after LT Ten (66.66%) of the respondents indicated that their health is much better than a year ago and 2 (13.3%) reported slightly better health than a year ago. Of all the patient categories, this category reported the best general assessment of their current health condition. (The category included only patients after unilateral and bilateral LT.)
Respondents in the period of 13–36 months after LT Eleven (64.70%) of the respondents indicated that their health is about the same as a year ago. (The category included only patients after unilateral and bilateral LT.)
Respondents in the period of 37–72 months after LT Eight (57.14%) of the respondents indicated that their health is about the same as a year ago; however, 22% indicated that
Table 6 – Expressions of patients after LT concerning their current health status according to the SF-36. P SF-36 Much better health Somewhat better health Health is about the same Health is somewhat worse Health is much worse than a year ago
2–12 months Pafter LT abs. (f.) ( /cumul. [cumul.] f.) 10 2 1 2 0
(66.66%/10) (13.33%/12) (6.66%/13) (13.33%/15)
13–36 months after PLT abs. f. ( /cumul. f.) 2 2 11 2 0
(11.76%/2) (11.76%/4) (64.70%/15) (11.76%/17)
37–72 months after P LT abs. f. ( /cumul. f.) 1 2 8 2 1
(7.14%/1) (14.28%/3) (57.14%/11) (14.28%/13) (7.14%/14)
73 and more months after P LT abs. f. ( /cumul. f.) 2 0 8 4 1
(13.33%/2) (53.22%/10) (26.66%/14) (6.66%/15)
The most frequent categories of expressions in a given time frame and a trend of deteriorating feeling of the quality of own health care are labelled grey.
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Table 7 – Statements of patients after LT concerning their health status, using the EuroQol questionnaire. 2–12 months after LT
13–36 months after LT
37–72 months after LT
73 and more months after LT
12 (80%)
15 (88.23%)
13 (92.85%)
13 (86.66%)
66.87
77.16
60.1
75
EuroQol – what is the percentage of patients who indicate a problem in one or more dimensions of the questionnaire EuroQol How do they feel now? 100 = best possible health status, 0 = worst health status The most problematic categories are labelled grey.
their health is somewhat or much worse than a year ago. The categories ‘‘much better’’ and ‘‘somewhat better’’ generated the same values as the categories ‘‘somewhat worse’’ and ‘‘much worse’’ than a year ago.
status. The score of 100 represents the best possible health status and the score of 0 represents the worst possible health status. The scores have been structured according to the time period elapsed since the LT:
Respondents in the period of 73 and more months after LT
– in the period spanning 3–12 months after LT, the score is 66.87; – in the period spanning 13–36 months after LT, the score is 77.16; – in the period spanning 37–72 months after LT, the score is 60.1; – in the period spanning 73 and more months after LT, the score is 75 (see Table 7).
Eight (53.22%) of the respondents indicated that their health is about the same; however, already more than 33% indicated that their health is ‘‘somewhat’’ worse and ‘‘much worse’’ than a year ago. Nonetheless, the ratings ‘‘much better’’ and ‘‘about the same’’ compared to a year ago remain more frequent than the ratings ‘‘somewhat worse’’ and ‘‘much worse’’. Using the EuroQol questionnaire, it was found that: – in the period spanning 2–12 months after LT: 12 (80%) of the respondents exhibited problems in one or more dimensions of the EuroQol questionnaire (only respondents after unilateral or bilateral LT were represented); – in the period spanning 13–16 months after LT: 15 (88.23%) of the respondents exhibited problems in one or more dimensions of the EuroQol questionnaire (only respondents after unilateral or bilateral LT were represented); – in the period spanning 37–72 months after LT: 13 (92.85%) of the respondents exhibited problems in one or more dimensions of the EuroQol questionnaire (the represented patients underwent lobar LT, unilateral as well as bilateral LT, and heart–lung transplantation); – in the period spanning 73 and more months after LT: 13 (86.66%) of the respondents exhibited problems in one or more dimensions of the EuroQol questionnaire (the represented patients underwent lobar LT, unilateral as well as bilateral LT, and heart–lung transplantation) – as described in detail in Table 7. According to the EuroQol (EQ-5D-5L), the results of the investigation in our group of respondents have demonstrated, in a noticeable way, the worst score in the area of pain/ discomfort (score = 2.76), indicating medium problems with pain/discomfort (for problems, the worst possible value is 5). Other areas with the greatest problems are anxiety/depression (score = 2.15) and mobility (score = 2.11). All values fluctuate at the medium level; no dimension has reached extreme values. On the contrary, the best results have been obtained for the following dimensions: usual activities (score = 1.5) and self-care (score = 1.8). The last item of the EuroQol questionnaire was a question on the respondents' current opinion concerning their health
Discussion According to the summary of the results of both questionnaires, the monitored lung transplant patients have exhibited the worst results in the quality of life in the following areas: social functioning, physical limitations/mobility, bodily pain/discomfort, and emotional problems/anxiety/depression [18, pp. 28–43]. When reflecting on the quality of life of these patents, it is necessary to include: – their age – our group included 49 respondents aged 46–70 years who possibly could have more health problems and declining physical and other abilities and skills, increased pain and the like due to age, not only due to LT, and only 12 respondents aged 18–45 years. For this age group, the problems generated will probably be from the area of health rather than age. – survival time – statistics for patients after LT – it is clear that if 50–55% of patients survive longer than 5 years and only 25% of patients longer than 10 years, the problems of those who do not survive this period must be reflected in the results of the quality of life measurements in a given category. Subsequently, it is logical that in the category over 37 months after transplantation, a reduction in the quality of life must manifest itself due to the deteriorating health status in a significant portion of the patients. Improving long-term quality of life in a group of patients after lung transplantation will, to some extent, depend on innovations in therapy. However, we do not know to what extent it would be possible to increase quality of life because of a lower incidence of complications and problems that can be affected by long-term nursing care while providing support or
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accompaniment. Nursing has an opportunity to work with the patients' problems for which the patients have reported a reduced quality of life (social functioning, bodily pain, physical limitations, emotional problems as well as physical functioning). According to the results of an Austrian study by authors Smeritschnig et al. [14], who used the SF-36 questionnaire, their transplant respondents exhibited, in the areas of mental health and vitality, quality of life similar to the healthy population. However, in the other dimensions, their scores were significantly lower. In our research study, we have obtained very similar results. The areas of vitality and mental health had values the closest to the general population as well, and in the other dimensions of our study, the global score has been markedly lower than the given average in the ‘‘User Guide’’ for the general population. From the results, comparing how the respondents have perceived their health status compared to a year ago, it emerges that the patients are faring somewhat better than the previous year or are faring the same – especially in the first 36 months after LT. Our results are similar. In a research study carried out in Canada (Montreal, Quebec), Vasiliadis et al. [12] obtained higher values in all the dimensions of the SF-36 compared with our study. We think this was caused especially by the composition of the respondents – their sample included only patients up to 5 years after LT whereas our sample has included patients up to 13 years after LT. The period starting about 4 years after transplantation appears to be the statistical beginning of deteriorating quality of life of patients after LT. The Canadian authors have had similar results in the most reduced dimensions of quality of life: physical limitation, general health, and bodily pain. We differed in the dimension of social functioning. According to Rutherford et al. [19] of Great Britain, their respondents were patients over 10 years after LT, and as expected, compared with normative data of the general population, they had significantly lower scores in all the parameters measured by the SF-36, except mental health and bodily pain. Our results differ in the dimension of physical pain, where our quality of life scores have been lower. The differences can be attributed to the composition of the respondents. The Norwegian authors Stavem et al. [20] have reported SF36 scores for respondents after lung transplantation that were significantly better in all the dimensions except bodily pain, compared with respondents prior to lung transplantation, with whom the values were compared. In comparison with the results of the Norwegian study, our respondents exhibited these most problematic dimensions of quality of life: emotional problems and social functioning. Our results are similar to the results of these authors in the mental health and physical functioning dimensions. The results obtained through the EQ-5D questionnaire can be discussed only in the context of the study from the UK, by authors Anyanwu et al. [15] which showed measurement results for individual lung transplantation types. Their sample included 255 patients after lung transplantation. In view of the small sample size in our study, we focused on transplanted patients as a whole. In addition, their study had a different time structure of categories of respondents according to the period after LT than we had in our study. However, the most important difference is the interpretation of results in terms of the intensity of occurrence of problems in the individual
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dimensions. The foreign study has shown only an extreme level of the exhibited problems; our study has shown all the detected problems. In terms of the structure of the problems, the results are very similar. The respondents of this British study had the greatest difficulty in these dimensions: daily activities, pain, and anxiety/depression. Our respondents have reported the greatest difficulty in these dimensions: pain/discomfort, anxiety/depression and mobility. None of the studies referred to mentioned retransplantation in their respondents. We believe that this group of patients would deserve its own investigation. A statistical correlation of results with foreign studies was not conducted because the studies on quality of life are not compatible in terms of sample respondents. If this is about the time after LT, they have included neither socio-cultural specifics nor the system nor contexts of health care and nursing care. The results of our study are an introductory probe at a general level concerning the degree of quality of life in patients after LT in relation to the quality of life in the general population.
Recommendations for Czech nursing In nursing practice, we see space for improving the quality of life in patients after lung transplantation by applying more effective methods of the nurse's work with the patient. Nowadays, it is in the scope of the nurse's work to implement patient education (education should encompass cognitive, affective, and behavioural components). At the present time, nurses are more likely to provide patients with information – they work, to a large extent, with the cognitive component (providing information). Conversely, work with the affective component is insufficient (systematic work with patients' emotions is lacking, and their attitudes are not affected) and so is work with the behavioural component – performatory – (they do not learn how to cope practically with challenges that will need to be addressed). Lung transplant patients are a very specific group of patients with a serious health condition, expensive treatment, and uncertain prognosis. They should receive appropriate long-term care and attention by nursing as well. Foreign literature describes the concept of nurse–patient supervision. It is a support method that provides not only space for education (and reeducation), but also a safe environment for patients to reveal their problems while coping with the treatment regimen, self-monitoring, normal daily life, anxiety attacks, etc. It is a method suitable for work with the chronically and terminally ill. Of their own accord, they initiate and bring issues to meetings with the nurse – topics they want to discuss and have a ‘‘chat’’ about. Therefore, it is not the health care professional who defines the content of the meetings. Instead, the patient is the one who decides what will be discussed. It is necessary to educate nurses – ideally, master's-prepared nurses (specialists) – in the area of reflective practice, listening, and developing nursing therapeutic alliances between nurses and patients as well as their families so that nurses can begin to develop the principles of supportive supervisory work with the patient. Moreover, they need further education in various methods and techniques of interactive work with the client (the techniques used in social
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work, psychotherapy, or androdidactics can be inspirational). The current education of nurses in the area of health care education is totally inadequate for such a type of long-term care. Moreover, it is necessary to consider a different work arrangement and provide specialized nurses an opportunity to work, during their working hours, with clients after lung transplantation individually (partly in personal meetings, and also by taking advantage of phone and electronic communication). For this type of long-term care, it would be appropriate to use, for example, such type of relational care. Patients would obtain a professional they would trust, with whom they would want to collaborate, who would support them on a long-term basis, and with whom they could talk about their problems at any time, without having to wait for a scheduled physician office visit. Supportive supervision can assist patients as they deal with issues concerning their social functioning and issues in the area of safety and security, manage pain, physical limitations, etc. more effectively. Every time, it can do so in a very specific way which really suits a given patient. Such a type of long-term nursing care that continuously provides comfort and enhances the patient's quality of life could help to reduce the cost of treating complications, reduce the need for repeated hospitalizations, and improve the quality of life of lung transplant patients and their families. Such a model requires: a concept of long-term nursing care, a specification of the nurse's scope of practice in the area of long-term care, an extension of the statute of a given workplace, further education of nurse-specialists, etc.
Conclusion Compared with the general population, the quality of life in Czech lung transplant patients is lower in all the dimensions of the SF-36. According to the SF-36 questionnaire, our adult lung transplant patients have exhibited the most reduced level of quality of life in the following dimensions: social functioning, bodily pain, general health, physical limitations, and emotional problems. Better results, i.e. a more satisfactory level of quality of life (a small difference in relation to the general population), have been obtained in the dimension of vitality and mental health. According to the EQ-5D-5L questionnaire of quality of life, patients after lung transplantation have exhibited problems in the following areas: pain/discomfort, anxiety/depression, and mobility, which corresponds to the results of the SF-36 questionnaire. The best results have been detected in the normal activities and self-care dimensions. In the area of overall assessment of their own health, it is possible to comment on the results as follows: the more time has elapsed since transplantation, the greater the reduction in the lung transplant patients' positive opinion concerning their own health. For the development of nursing care, it is necessary to examine this specific group of patients in more detail concerning their issues and needs in order to develop, in a targeted way, a system of longterm nursing care of such patients.
Conflict of interest No conflict of interest.
Acknowledgement The article is dedicated to the specific research of the Institute of Nursing, FVP (FPP), SLU (SU) in Opava, IGS 15/2013.
references
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