Long-term psychosocial outcomes after heart transplantation

Science & Sports 1996; I 1~23-27 0 Elsevier. Paris

Physical exercise and transplantation

Long-term psychosocial outcomes after heart transplantation T Kavanagh’* 3*, MH Yacoub2, J Kennedy3 ‘Department

of Medicine, University of Toronto, Toronto, Ontario, Harefield Hospital, Middlesex, UK; ’ Toronto

Canada ; 2cardiothoracic Surgery, National Heart Rehabilitation Centre, Toronto, Ontario, Canada

INTRODUCTION

METHODS

Heart transplantation is now the accepted mode of treatment for “end-stage” heart disease. With five- and tenyear survival rates of 68% and 56% respectively its effectiveness in increasing the quantity of life is proven (Hosenpud et al, 1994). There is also ample evidence that quality of life is improved, at least when one compares the post-surgical condition with the pre-surgical state of severe invalidism (Mai et al, 1990; Jones et al, 1988). Nevertheless, the adjustments in lifestyle required to comply with the rigorous post-transplant protocol can be very stressful, not only to the patient, but also to the spouse and family. Not everyone possesses the ability to cope with these demands, and as the years progress and the immediate elation at surviving a terminal illness fades, emotional, interpersonal, and vocational problems may become apparent (Kuhn et al, 1988). The Toronto Rehabilitation Centre’s experience with heart transplantation patients began in 1983 with ajoint project between the Centre and Harefield Hospital, England. This has afforded the rehabilitation team the opportunity to carry out a long-term psychosocial followup of the first 50 patients referred for assessment and rehabilitation. In addition to physiological measurements, quality of life and psychological assessments were also carried out at varying intervals during the rehabilitation programme, with further follow-up by interview and questionnaire at five years and ten years, *Correspondence and M4G I R7, Canada

reprints: Terence

Kavanagh,

and Lung Institute:

Medical

Director,

The subjects consisted of 50 heart transplant recipients, 48 men and 2 women, with a mean age at the time of surgery of 47.8 SD 8.5 years. The average time elapsing from surgery to initial assessment was 12.7 SD 10.6 months, with a total follow-up period of 9.9 SD 1.2 years from the date of surgery. Over that period of time, 13 men, or 26% of the group, died from a variety of transplant related conditions (malignancies, lymphoma, sudden death, kidney disease, and opportunistic infection). Seven deaths occurred within five years of surgery, and a further six by the end of the follow-up.

REHABILITATION

PROGRAMME

This consisted of a walking/jogging regimen (Kavanagh et al, 1988) the pace of the walk determined from the results of the exercise test, taking 70% of measured peak oxygen intake, and/or the ventilatory threshold, and/or a perceived exertion of 12 to 14 on the original Borg scale (Borg, 1962). The average initial prescription called for a distance of 1.6 km, five times weekly, the aim being to increase this to 6.5 km for a total of 32.5 km per week over a period of two years. Other aspects of the programme included lectures on cardiovascular conditioning and exercise physiology, advice on participation in other types of sports activities, and discussions on smoking cessation, diet, weight control, stress reduction, effects and side-effects of medications, and return to work. Toronto

Rehabilitation

Centre, 345 Rumsey

Road, Toronto,

Ontario

24

T Kavanagh

PSYCHOSOCIAL

ASSESSMENT

The following tests were employed: the Minnesota Multiphasic Personality Inventory Depression Scale (MMPI-D) (Hathaway, McKinley, 1948). The Taylor Manifest Anxiety Scale (Taylor, 1953). The Zung SelfRating Depression Scale (SDS) (Zung, 1965) and the Nottingham Health Survey (NHS) (Hunt et al, 1984) Administration and interpretation of the MMPI-D was carried out by a clinical psychologist who also interviewed all patients during the rehabilitation programme. The remaining self-rating questionnaires were presented by a trained registered nurse. Scoring and interpretation of the questionnaires were carried out by a clinical psychologist. Employment patterns were recorded at discharge from the rehabilitation programme, and at five and ten years post-transplantation. Exercise habits at ten years were obtained by interview and physical activity questionnaire. Not all patients completed all tests, and attenuation of sample size is indicated where appropriate. Statistical analysis: Pearson’s correlation coefficient was used to assess the strength of association between changes in cardiorespiratory fitness (peak oxygen intake), passage of time from transplantation procedure, and changes in MMPI -D and TMAnx scores. RESULTS Training effects These have been described in detail elsewhere (Kananagh et al, 1988, 1989). Comparison of initial and final exercise test results showed significant increases in lean body mass, which was the likeliest major contributor to significant improvements in peak power output, absolute ventilatory threshold, and peak oxygen intake. There was also a reduction in resting heart rate, systolic and diastolic blood pressure, and peakdiastolic blood pressure, with enhanced peak heart rate and systolic blood pressure. Submaximal exercise measurements also demonstrated an aerobic training effect. All changes were more marked in those patients who had the highest compliance with the training regimen. One of the more highly motivated subjects entered and completed the Boston Marathon, 12 months after commencing the programme and 15 months after his transplantation procedure (Kavanagh, 1986). Mood state Depression (MMPI-D) levels were measured in 38 patients at entry to and during the final three months of

et al

the training programme. When first seen, the group averaged D-score was elevated (24.6 SD 5.2), indicating moderate depression. This high D-score was significantly correlated with a low initial peak oxygen intake (r = -0.52; P < 0.05). Endurance training was associated with a significant reduction in depression score to normal levels, 19.8 SD 4.2 (A 4.8 SD 6.1; P < 0.01). Over the course of this period cardiovascular fitness, as measured by peak oxygen intake, increased by 38%. There was a significant correlation between this improvement in fitness and the reduction in depression (r = -0.63;P < 0.01). Taylor manifest anxiety scale This asks a total of 50 yes/no questions, yielding a single score for manifest anxiety, with typical normal values of 10 or less. Initial testing showed high scores (16.1 SD 12.2), with several patients having readings over 20. There was a significant reversion towards population norms over the course of training, to give a score of 11.3 SD 8.6 (A 4.8 SD 7.8; P < 0.05). This reduction in anxiety correlated significantly with the passage of time from surgery (r = -0.5; P < O.OOl), but not with improvement in fitness (peak oxygen intake) (r = -0.22). Return to work At the time of discharge from the programme a gratifying 73% of the patients had returned to work (60% full-time, 13% part-time or modified duties), with 10% electing to take early retirement, and 17% unemployed (14% for non-medical reasons, and 3% because of illhealth). There was a slight deterioration in the employment situation at the five-year follow-up, with 68% of the survivors working (58%full-time and 10% parttime), 26% unemployed, and 6% retired. At the final lo-year follow-up, 63% were working, with 53% full-time and 10% part-time. Retirements had increased to 25%, despite an average age of only 58 years, and most claimed that the decision to take early retirement had been influenced by a combination of indifferent health and employer pressure. Of the 12% who were now unemployed, only 3% felt that this was due to the economic recession, with 10% claiming medical reasons. In response to the general query regarding their overall standard of living, 35% reported that this had dropped due to a reduction in their earning capacity.

25

Heart transplantation No. of Patients

0.25

0.3

Not Depressed

0.35

0.4

0.45

0.5

0.55

0.6

0.65

0.75 ,

+.

Fig 1. Zung Self Rating Depression tation: n = 36.

0.7

0.6

Depressed

Fig 2. Nottingham Health Profile transplantation; n = 22.

scores 10 years after transplan25

Perceptions

I scores, before and one year after

of life after transplantation

The patients were also asked to list their main worries five years after transplantation. They are ranked in accordance with the frequency with which they were mentioned: -job security; advice and assistance in obtaining and maintaining employment, either full- or part-time, was considered paramount; - maintaining pre-illness living standards; - public acceptance; many patients felt that they were still seen as “medical curiosities”; - excessive weight gain; - “minor” side-effects of immunosuppressant drugs; although all had been made aware of the major side-effects, symptoms such as nocturnal leg cramps, hand tremor, photosensitivity, and excessive hair growth, were disturbing and had not been anticipated.

Meanscars

20

Fig 3. Nottingham Health Profile I scores, at two five and ten years after transplantation; n = 30 at 2 years; 26 at 5 years; 20 at 10 years.

week; about one-quarter cycled for 40 minutes, four times weekly, while a few maintained 60 minutes of jogging, four times weekly, or 45 minutes of swimming, twice weekly. Zung self-rating depressionscale (fig 1)

Major medical problems Ten years after surgery there was an increasing incidence in long-term complications, with 45% of patients reporting major problems. These included renal complications, accelerated coronary atherosclerosis, hypertension, malignancy, lymphoma, pancreatitis, peptic ulcers, hip replacement surgery, major rejection episodes, and gout. Physical activity patterns Ten years after surgery, 75% of surviving patients reported they were still walking three to four miles, four times weekly; almost 50% gardened regularly, spending about 50 minutes weekly on this pastime twice a

This 50-item self-rating questionnairewas completed at the ten-year final follow-up. The majority of patients were in the normal range, none were markedly depressed,and only a few mildly depressed. Nottingham health profile: part 1 (figs 2 and 3) This quality of life measurementassesses physical mobility, energy, pain, emotional reaction, sleep, social isolation. “Yes” or “no” responsesto personal questions were scoredin a rangefrom zero to 100;the higher the score,the more the problemsbeing experienced by the patient. Scoresobtainedbefore transplantationwere comparedwith thoserecordedapproximately one year after surgery. Significant improvements were seenin

T Kavanagh et al

26 25

I” Patients

work

with problems

HOme

Social

,

Relations

Sex

Hobbies

Haliiays

Fig 4. Nottingham Health Profile II scores at 10 years; n = 37.

all dimensions,but particularly in physical mobility, energy, sleep,and emotional reaction. Repeatmeasurements weremadeat two, five, andten years after surgery. Continued improvement was seen in all areasat two years. At five and ten years there was increasedcomplaints of pain; in fact by ten years this had reachedpre-transplantlevels. There wasalsoslight deterioration in physical mobility, energy, and emotional reactions, although scoresin these areasdid not exceed the normal of 15. Scores for social isolation continued to improve during the secondand fifth years, regressingonly slightly by the tenth year. Sleepscores were relatively unalteredfrom two to ten years. Nottingham health profile: part 2 (fig 4) This enquiresas to whether patients are experiencing health problemsaffecting their working life, activities in the home, social life, relationshipsat home,sex life, hobbies,and holidays. Scoreswere obtainedten years after surgery. Although the percentageof patients reporting difficulties waslow in most dimensions,some 20% reported that work related activities and sex life were still being adversely affected by their health problems. DISCUSSION There is dramatic immediate improvement in general healthandquality of life after hearttransplantation,particularly in the areasof physical performance, leisuretime activities, and social relationships, and much of this persistsfor up to ten yearsafter surgery. Sixty-eight percent of survivors are working after five years, and 63% after ten. Patientswho have undergonerehabilita-

tion still maintain a reasonablygood level of recreational physical activity at ten years. The presenceof depressionin over half of the patients some12 monthsafter transplantationseemsa variance with the observationsof other authors who report almost completealleviation to depressionby the sixth to twelfth month (Joneset al, 1988). This may be an expressionof the differing immunosuppressantdrug regimens,the Harefield patientsreceiving little or no steroids after the immediate post-operative period, and thus not being exposedto their possibleeuphoric sideeffects. Another explanation for the variance may lie in the differing testsusedto delineateand measuredepression. In our experience, the MMPI-D score is a more sensitivedetector of depressionthan someof the questionnaireswhich are commonly utilized and are based on experiencewith psychiatric patients. The beneficial effects of aerobicexercisein reducing depressionlevels is not entirely unexpected, similar results being reported by us in a group of trained post-myocardial infarction patientsin 1973(Kavanagh et al, 1977).Interestingly, however, the Zung Self-Rating DepressionScore revealed only a few patientswho were mildly depressed after ten years. There is no doubt that somepatients do experience major problemsin the areasof material well-being, occupational activities (job conditions, employer-employee relationships,job satisfaction) and marital relations. Thesedifficulties have been identified by other authors(Buse andPieper, 1990; Shapiro, 1990)and we seethat they tend not to improve with time. Although most patients were physically and intellectually capable of returning to full-time work within a year or so of surgery, discriminatory hiring practices and employer bias sometimesprevents this. The resultant reduction in living standardsfrequently allied with the need for the spouseto work, can lead to or aggravate marital disharmony. In conclusion,this study hasshown that although the quality of life appearsto have been maintained in the majority of patients, specifically at ten years, several areasneedto be addressedin order to optimize results. Theseinclude, in order of priority aswe seeit: - educatethe employers with a view to removing illconceived conceptionsregarding heart transplantation; - re-assess patientsperiodically with a view to offering a short course of rehabilitation; encouragediscussion of marital problems,and be aware of the need for sex counselling,preferably in the Transplant Unit setting; - re-evaluate return to work legislation.

27

Heart transplantation

Borg G. Physical performance and perceived exertion. Sweden: Gleerup Lund, 1962: 1-63 Buse SM, Pieper B. Impact of cardiac transplantation on the spouse’s life. Heart Lung 1990;19:641-8 Hathaway SR, McKinley JC. T!x Minnesota Multiphasic Personality Inventory. New York, The Psychological Corporation, 1948 Hosenpud JD, Novick RJ, Breen TJ, Daily OP. The registry of the International Society for Heart and Lung Transplantation: Eleventh Official Report - 1994. J Heart Lung Transplant 1994;13:561-70 Hunt SM. McEwen J, McKenna SP. Perceived health: age and sex comparisons in a community. J Epidemiul Communiry Health 1984:38:156-60 JonesBM, Chang VP, Esmore D et al. Psychological adjustment after cardiac transplantation. Med JAust 1988;149:118-22 Kavanagh T, Shephard RJ, Tuck JA, Qureshi S. Depression following myocardial infarction: the effects of distance running. In: The Marathon:

Physiolvgicul,

Medical,

Studies. New York: Ann of the New York Academy of Sciences, 1977;301:1029-38 Kavanagh T, Yacoub MH, Campbell RB, Mertens D. Marathon running after cardiac transplantation: a case history. J Cardiopulmonary Rehabil 1986;6: 16-20 Kavanagh T, Yacoub M, Mertens DJ, Kennedy J, Campbell RB, Sawyer P. Cardiorespiratory responses to exercise training after orthotopic cardiac transplantation. Circulution I988;77: 162-71 Kavanagh T, Yacoub MH, Mertens DJ, Campbell RB, Sawyer P. Exercise rehabilitation after heterotopic cardiac transplantation. Psychological

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