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Quality of life after heart and heart-lung transplantation
Quality of Life After Heart and Heart–Lung Transplantation M. Hummel, I. Michauk, R. Hetzer, and B. Fuhrmann
T
ODAY transplantation is an established method in the treatment of patients with end-stage heart and lung diseases. Earlier scientific interest was primarily focused on somatic aspects and especially on the improvement of survival. Now, after improvement of intermediate and long-term survival, quality of life has become an increasingly important issue. Most information concerning the quality of life comes from the patients themselves. We therefore examined the physical and emotional condition at the end of phase-II rehabilitation (ie, after the first hospital discharge) and also the quality of life 2 to 7 years after heart and heart-lung transplantation in a substantial group of patients using the standardized questionnaire SF-36 with eight items.1
PATIENTS AND METHODS The study covers 369 patients who had successful heart (350) and heart-lung transplantation (19), performed between January 1991 and December 1995, at the German Heart Institute Berlin and afterwards were transferred to a specialized rehabilitation center. The mean age of heart transplant recipients was 47.9 years (range 12 to 66), and the mean age of heart-lung transplant recipients was 31.1 years (range 13 to 55). At the end of phase-II rehabilitation, the physical condition of patients was determined by the maximum possible workload which could be achieved for 15 minutes during bicycle exercise. Additionally, a survey was completed by the end of 1997, 2 to 7 years after transplantation, asking patients about their mental and physical condition, family situation, and working life by the standardized and validated questionnaire SF-36.1 The items were statistically analyzed with the SPSS software, whereby a value above 50 means that there is no substantial restriction and a value close to 100 can only be reached with a particularly good assessment. The values of the transplanted patients were compared to the data of an age-matched healthy population and also to those of a cohort of patients suffering from advanced heart failure, which are provided by the SF-36 handout.
Table 1. Survey at the End of Phase-II Rehabilitation General condition
Physical
Emotional
Mental
Very good Good Moderate, indifferent Unsatisfactory No information
11 45 5 0 0
13 42 6 0 0
8 38 13 1 1
n ⫽ 61.
Table 2. Bicycle Exercise by the End of Phase-II Rehabilitation Patient number
10 230 58 8 63
Bicycle exercise for 15 minutes
⬍ 25 watts ⱖ25–50 watts ⱖ50 to–75 watts ⱖ 75 watt no information
n ⫽ 369.
RESULTS
At the end of phase-II rehabilitation following the first hospital discharge after transplantation, 90% of a subgroup of 61 patients (which could be analyzed in detail) graded their physical and emotional condition as good or very good. Regarding their mental situation, 75% of the patients felt good or very good (Table 1). In contrast, at that time, the physical strength of 369 transplanted patients was remarkably low, because 2.7% of the patients could not reach 25 watts, 62% were only able to exercise 25 to 50 watts, and only a minority of patients (17.8%) were able to achieve a workload of more than 50 watts for 15 minutes during bicycle exercise (Table 2). In the survey 2 to 7 years after transplantation, patients were also asked about changes in their family situation. In the majority of patients (72%), we found stable family relationships, whereas eight had separated from their partner and 10 patients had a new partnership, with 7 marriages after transplantation. With the SF-36 questionnaire, the short form of the Medical Outcomes Survey (MOS), 369 patients were asked about their quality of life 2 to 7 years after transplantation. Of the 203 returning questionnaires, 164 were completed and could be included in the analysis (Table 3). The rolephysical of the patients was moderately impaired (value: 45.4). This means that the physical status frequently hinders them in coping with work or other daily activities. In contrast, the social functioning and the role-emotional was quite good (values: 72, 69.2). Therefore, emotional prob-
From the Deutsches Herzzentrum Berlin (M.H., R.H.), Bundesversicherungsanstalt fu¨r Angestellte Berlin (I.M.), Rehabilitationsklinik Seehof der BfA (BF), Berlin, Germany. Address reprint requests to Ilka Michauk, MD, Bundesversicherungsanstalt fu¨r Angestellte, Ruhrstrasse 2, 10704 Berlin, Germany.
0041-1345/01/$–see front matter PII S0041-1345(01)02427-7
© 2001 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
3546
Transplantation Proceedings, 33, 3546–3548 (2001)
QUALITY OF LIFE AFTER HEART LUNG TRANSPLANT
3547
Table 3. Results of the SF 36 Questionnaire 2 to 7 Years After HTx Compared with a Healthy Population and Patients with Advanced Heart Failure SF-36
Tx/HLTx Patients
Healthy Population
Heart Failure
Items
N ⫽ 203
N ⫽ 428
N ⫽ 271
Physical functioning Role-physical Bodily pain General health perceptions Vitality Social functioning Role-emotional Mental health
Mean
SE
Mean
SE
Mean
SE
58.29 45.38 64.00 58.29 51.25 72.04 69.22 58.11
2.10 3.32 2.26 2.10 1.54 1.92 3.19 1.17
88.95* 87.49* 78.90* 68.00* 64.13* 89.36* 91.51* 73.66*
17.61 27.69 28.05 18.88 16.47 17.34 22.76 15.55
57.88 48.05 50.74* 42.05* 45.18* 74.11 72.89 62.93*
26.20 39.42 25.78 18.15 18.50 23.83 37.68 18.24
*P ⬍ .05.
lems did not interfere meaningfully with social or daily activities. Compared with the analyzed patient group, the SF-36 values of an age-matched healthy population were significantly higher for all items, but the most distinctive feature was in the physical functioning and the physical role (Fig 1). In contrast, patients suffering from advanced heart failure had lower values in the items of their bodily pain (value 50.7) and the general health perception and vitality (value 42, 45.2) but a higher mean value of the item of mental health (value: 62.9; Fig 2). In our survey, 2 to 7 years after transplantation only 5.2% of all 369 transplant recipients returned to full-time employment and 10.6% were working part-time, 3.8% went to school or university, and 1.6% were housewives. A substantial proportion (40.4%) of patients was receiving a disability pension, and only few patients were getting social welfare (2.2%). From the rest of the patients we could not get sufficient information concerning their state of employment. DISCUSSION
Shortly after transplantation most of the patients judged their status positively, even though their physical status was still low at that time. This discrepancy is comparable to the
Fig 1. Quality of life evaluation 2 to 7 years after Tx compared to a healthy population (SF-36).
results of another large study performed in Austria in 1994,2– 4 which means that the emotional feeling shortly after transplantation of being transplanted successfully supervenes the physical impairment due to muscular weakness. In nearly all cases, we found stable family relationships 2 to 7 years after transplantation. This is a good indicator for a hopeful attitude of the patients’ partners for the future. Similar results with stable familiar relationships in the intermediate term after transplantation were also found in another survey.5 By looking at the results of the SF-36 questionnaire, the normal activities 2 to 7 years after transplantation were only modestly impaired compared to a healthy population and were much better than in patients suffering from advanced heart failure. Similar to the results in the studies performed by Lough and Rosenblum, 6,7 in our survey we discovered a moderate impairment in physical functioning and role physical compared to a healthy population. Work is an important factor for the integration of patients into normal life. The percentage of patients returning to working life was below our expectations, though mostly not for medical reasons. The most important factors that negatively influ-
3548
HUMMEL, MICHAUK, HETZER ET AL
Fig 2. Quality of life evaluation 2 to 7 years after Tx compared to patients with advanced heart failure (SF-36).
enced the way back to a working life aside from age at time of transplantation, were the length of medical disability prior to the transplantation, concomitant diseases to endstage heart failure, a patient’s self perception of being unable to work, the safety of the social system (disability income, social welfare) in Germany, and the actually relative high level of unemployment in the general population (⬎ 10%). None of the patients who did not work for more than 3 years prior to transplantation went back to full-time employment after transplantation in contrast to patients who went back to work after transplantation with a mean working incapability before transplantation of only 6.1 months. These results have to be discussed within the background of the distinctive social conditions and welfare systems in other countries and also in the former German Democratic Republic, from where other data of the working state after heart transplantation, mostly with a higher employment state, are available.8 –10 CONCLUSION
Shortly after transplantation most of the transplanted patients estimated their personal status positively, even though their physical capabilities were largely impaired at that time. In the intermediate period after transplantation (2 to 7 years) family relationships remained stable in the majority of the patients and there were significant impairments in the physical functioning and the physical role but only minor impairments of the normal activities compared
to a healthy population. Compared to patients with advanced heart failure, there is a considerable improvement of the quality of life after heart transplantation concerning particularly the vitality, mental health, general health perception, and bodily pain. In contrast to the relatively good quality of life after transplantation, only a low proportion of patients went back to a working life with full-time employment, which besides medical reasons and advanced age is influenced mainly by the German welfare and social systems as well as the actually high unemployment rate in the general population. REFERENCES 1. McHorney CA, Ware JE, Raczek AE: Medical Care 31:247, 1993 2. Bunzel B, Wolloneck G, Zuckermann A: Herz/Kreisl 26:41, 1994 3. Bunzel B, Wolloneck G, Zuckermann A: Herz/Kreisl 26:113, 1994 4. Bunzel B, Wolloneck G, Grundbo ¨ck A, et al: Herz 18:294, 1994 5. Straub B, Thormann T, Strenge H: Qual Life Res 12:24, 1993 6. Lough ME: J Cardiovasc Nurs 2:11, 1988 7. Rosenblum, DS, Rosen ML, Pine ZM, et al: Arch Phys Med Rehabi l74:490, 1993 8. Paris W, Woodur A, Thompson S, et al: J Heart Lung Transpl 12:46, 1993 9. Shapiro PA: Prog Cardiovasc Dis 32:405, 1990 10. Warnke H, Bohm J, Engelmann U, et al: T Klein Med. 46:1477, 1991
T
ODAY transplantation is an established method in the treatment of patients with end-stage heart and lung diseases. Earlier scientific interest was primarily focused on somatic aspects and especially on the improvement of survival. Now, after improvement of intermediate and long-term survival, quality of life has become an increasingly important issue. Most information concerning the quality of life comes from the patients themselves. We therefore examined the physical and emotional condition at the end of phase-II rehabilitation (ie, after the first hospital discharge) and also the quality of life 2 to 7 years after heart and heart-lung transplantation in a substantial group of patients using the standardized questionnaire SF-36 with eight items.1
PATIENTS AND METHODS The study covers 369 patients who had successful heart (350) and heart-lung transplantation (19), performed between January 1991 and December 1995, at the German Heart Institute Berlin and afterwards were transferred to a specialized rehabilitation center. The mean age of heart transplant recipients was 47.9 years (range 12 to 66), and the mean age of heart-lung transplant recipients was 31.1 years (range 13 to 55). At the end of phase-II rehabilitation, the physical condition of patients was determined by the maximum possible workload which could be achieved for 15 minutes during bicycle exercise. Additionally, a survey was completed by the end of 1997, 2 to 7 years after transplantation, asking patients about their mental and physical condition, family situation, and working life by the standardized and validated questionnaire SF-36.1 The items were statistically analyzed with the SPSS software, whereby a value above 50 means that there is no substantial restriction and a value close to 100 can only be reached with a particularly good assessment. The values of the transplanted patients were compared to the data of an age-matched healthy population and also to those of a cohort of patients suffering from advanced heart failure, which are provided by the SF-36 handout.
Table 1. Survey at the End of Phase-II Rehabilitation General condition
Physical
Emotional
Mental
Very good Good Moderate, indifferent Unsatisfactory No information
11 45 5 0 0
13 42 6 0 0
8 38 13 1 1
n ⫽ 61.
Table 2. Bicycle Exercise by the End of Phase-II Rehabilitation Patient number
10 230 58 8 63
Bicycle exercise for 15 minutes
⬍ 25 watts ⱖ25–50 watts ⱖ50 to–75 watts ⱖ 75 watt no information
n ⫽ 369.
RESULTS
At the end of phase-II rehabilitation following the first hospital discharge after transplantation, 90% of a subgroup of 61 patients (which could be analyzed in detail) graded their physical and emotional condition as good or very good. Regarding their mental situation, 75% of the patients felt good or very good (Table 1). In contrast, at that time, the physical strength of 369 transplanted patients was remarkably low, because 2.7% of the patients could not reach 25 watts, 62% were only able to exercise 25 to 50 watts, and only a minority of patients (17.8%) were able to achieve a workload of more than 50 watts for 15 minutes during bicycle exercise (Table 2). In the survey 2 to 7 years after transplantation, patients were also asked about changes in their family situation. In the majority of patients (72%), we found stable family relationships, whereas eight had separated from their partner and 10 patients had a new partnership, with 7 marriages after transplantation. With the SF-36 questionnaire, the short form of the Medical Outcomes Survey (MOS), 369 patients were asked about their quality of life 2 to 7 years after transplantation. Of the 203 returning questionnaires, 164 were completed and could be included in the analysis (Table 3). The rolephysical of the patients was moderately impaired (value: 45.4). This means that the physical status frequently hinders them in coping with work or other daily activities. In contrast, the social functioning and the role-emotional was quite good (values: 72, 69.2). Therefore, emotional prob-
From the Deutsches Herzzentrum Berlin (M.H., R.H.), Bundesversicherungsanstalt fu¨r Angestellte Berlin (I.M.), Rehabilitationsklinik Seehof der BfA (BF), Berlin, Germany. Address reprint requests to Ilka Michauk, MD, Bundesversicherungsanstalt fu¨r Angestellte, Ruhrstrasse 2, 10704 Berlin, Germany.
0041-1345/01/$–see front matter PII S0041-1345(01)02427-7
© 2001 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
3546
Transplantation Proceedings, 33, 3546–3548 (2001)
QUALITY OF LIFE AFTER HEART LUNG TRANSPLANT
3547
Table 3. Results of the SF 36 Questionnaire 2 to 7 Years After HTx Compared with a Healthy Population and Patients with Advanced Heart Failure SF-36
Tx/HLTx Patients
Healthy Population
Heart Failure
Items
N ⫽ 203
N ⫽ 428
N ⫽ 271
Physical functioning Role-physical Bodily pain General health perceptions Vitality Social functioning Role-emotional Mental health
Mean
SE
Mean
SE
Mean
SE
58.29 45.38 64.00 58.29 51.25 72.04 69.22 58.11
2.10 3.32 2.26 2.10 1.54 1.92 3.19 1.17
88.95* 87.49* 78.90* 68.00* 64.13* 89.36* 91.51* 73.66*
17.61 27.69 28.05 18.88 16.47 17.34 22.76 15.55
57.88 48.05 50.74* 42.05* 45.18* 74.11 72.89 62.93*
26.20 39.42 25.78 18.15 18.50 23.83 37.68 18.24
*P ⬍ .05.
lems did not interfere meaningfully with social or daily activities. Compared with the analyzed patient group, the SF-36 values of an age-matched healthy population were significantly higher for all items, but the most distinctive feature was in the physical functioning and the physical role (Fig 1). In contrast, patients suffering from advanced heart failure had lower values in the items of their bodily pain (value 50.7) and the general health perception and vitality (value 42, 45.2) but a higher mean value of the item of mental health (value: 62.9; Fig 2). In our survey, 2 to 7 years after transplantation only 5.2% of all 369 transplant recipients returned to full-time employment and 10.6% were working part-time, 3.8% went to school or university, and 1.6% were housewives. A substantial proportion (40.4%) of patients was receiving a disability pension, and only few patients were getting social welfare (2.2%). From the rest of the patients we could not get sufficient information concerning their state of employment. DISCUSSION
Shortly after transplantation most of the patients judged their status positively, even though their physical status was still low at that time. This discrepancy is comparable to the
Fig 1. Quality of life evaluation 2 to 7 years after Tx compared to a healthy population (SF-36).
results of another large study performed in Austria in 1994,2– 4 which means that the emotional feeling shortly after transplantation of being transplanted successfully supervenes the physical impairment due to muscular weakness. In nearly all cases, we found stable family relationships 2 to 7 years after transplantation. This is a good indicator for a hopeful attitude of the patients’ partners for the future. Similar results with stable familiar relationships in the intermediate term after transplantation were also found in another survey.5 By looking at the results of the SF-36 questionnaire, the normal activities 2 to 7 years after transplantation were only modestly impaired compared to a healthy population and were much better than in patients suffering from advanced heart failure. Similar to the results in the studies performed by Lough and Rosenblum, 6,7 in our survey we discovered a moderate impairment in physical functioning and role physical compared to a healthy population. Work is an important factor for the integration of patients into normal life. The percentage of patients returning to working life was below our expectations, though mostly not for medical reasons. The most important factors that negatively influ-
3548
HUMMEL, MICHAUK, HETZER ET AL
Fig 2. Quality of life evaluation 2 to 7 years after Tx compared to patients with advanced heart failure (SF-36).
enced the way back to a working life aside from age at time of transplantation, were the length of medical disability prior to the transplantation, concomitant diseases to endstage heart failure, a patient’s self perception of being unable to work, the safety of the social system (disability income, social welfare) in Germany, and the actually relative high level of unemployment in the general population (⬎ 10%). None of the patients who did not work for more than 3 years prior to transplantation went back to full-time employment after transplantation in contrast to patients who went back to work after transplantation with a mean working incapability before transplantation of only 6.1 months. These results have to be discussed within the background of the distinctive social conditions and welfare systems in other countries and also in the former German Democratic Republic, from where other data of the working state after heart transplantation, mostly with a higher employment state, are available.8 –10 CONCLUSION
Shortly after transplantation most of the transplanted patients estimated their personal status positively, even though their physical capabilities were largely impaired at that time. In the intermediate period after transplantation (2 to 7 years) family relationships remained stable in the majority of the patients and there were significant impairments in the physical functioning and the physical role but only minor impairments of the normal activities compared
to a healthy population. Compared to patients with advanced heart failure, there is a considerable improvement of the quality of life after heart transplantation concerning particularly the vitality, mental health, general health perception, and bodily pain. In contrast to the relatively good quality of life after transplantation, only a low proportion of patients went back to a working life with full-time employment, which besides medical reasons and advanced age is influenced mainly by the German welfare and social systems as well as the actually high unemployment rate in the general population. REFERENCES 1. McHorney CA, Ware JE, Raczek AE: Medical Care 31:247, 1993 2. Bunzel B, Wolloneck G, Zuckermann A: Herz/Kreisl 26:41, 1994 3. Bunzel B, Wolloneck G, Zuckermann A: Herz/Kreisl 26:113, 1994 4. Bunzel B, Wolloneck G, Grundbo ¨ck A, et al: Herz 18:294, 1994 5. Straub B, Thormann T, Strenge H: Qual Life Res 12:24, 1993 6. Lough ME: J Cardiovasc Nurs 2:11, 1988 7. Rosenblum, DS, Rosen ML, Pine ZM, et al: Arch Phys Med Rehabi l74:490, 1993 8. Paris W, Woodur A, Thompson S, et al: J Heart Lung Transpl 12:46, 1993 9. Shapiro PA: Prog Cardiovasc Dis 32:405, 1990 10. Warnke H, Bohm J, Engelmann U, et al: T Klein Med. 46:1477, 1991