Journal of Surgical Oncology 5 1 :47-5 1 ( 1992)
Quality of Life in Bone Tumor Patients Comparing Limb Salvage and Amputation of the Lower Extremity ALEIDA POSTMA, MU, ANNET KINGMA, MSC,JOHAN H. DE RUITER, MA, HEIMENSCHRAFFORDT KOOPS, MU, RENE P.H. VETH, MD, LUDWIG N.H. GOEKEN, MD, AND WILLEM A. KAMPS, MD From the Departments of Pediatric Oncology (A.P., A.K., W.A.K.), Surgical Oncology (H.S.K.), Orthopedics (R.P.H.V.), and Rehabilitation (L.N.H.C.), University Hospital, Cronrngen, and the Department of Health Science (1.H.d.R.), State University, Croningen, The Netherlands
In 33 long-term survivors of lower extremity bone cancer quality-of-life data were studied following limb salvage compared to amputation. Selfreport questionnaires, semistructured interviews and visual analog scales were used to measure psychoneurotic and somatical distress, activities of daily living, self-esteem, and adjustment to illness. Fourteen patients with limb salvage (age 13-56 years, median 24) and 19 patients with an amputation (age 21-53 years, median 27) were evaluated 2-17 years (median 10 years) after surgery. The differences between the two groups were not statistically significant. However, physical complaints were reported more often by limb salvage patients, whereas the amputees showed a trend toward lower self-esteem and isolation in social life, due to their disability. Both groups felt equal diminution of quality of life and disability as measured on the visual analog scale. These findings could support the cosmetic advantage of limb salvage compared to amputation. 0 1992 Wiley-Liss, Inc.
KEYWORDS:psychosocial adjustment, self-esteem, disability, limb salvage, amputation
INTRODUCTION With increasing patient survival in oncology the psychosocial consequences of treatment become increasingly important. In surgical management of malignant bone tumors many centers prefer the limb-saving approach above amputation because of the anticipated quality of life advantage. As malignant bone tumors mainly occur during adolescent life, when body image is of particular importance, amputation might complicate normal psychosocial development and have an adverse effect on quality of life. However, two studies evaluating the psychosocial effects of amputation on adolescent cancer patients demonstrated that the overall adjustment appeared to be good [ 1,2]. Sugarbaker et al. [3] and Weddington et al. [4] evaluated the impact of limb sparing surgery versus amputation in extremity sarcoma patients. Both studies failed to demonstrate a significant difference between 0 1992 Wiley-Liss, Inc.
the two treatment modalities. Both studies were performed shortly after surgery (mean time lapse G 3 years) and apply to adult patients with upper and lower extremity sarcomas. The purpose of our study was to compare long-term quality-of-life data in lower limb bone tumor patients, including adolescents who underwent limb salvage versus amputation.
PATIENTS AND METHODS Patients All patients aged 12 years and older with no evidence of disease who were more than 2 years after definitive surgery for a lower limb malignant bone tumor, were Accepted for publication May IS, 1992 Address reprint requests t o Dr. Aleida Postma, Dcpartment of Pediatric Oncology, University Hospital, University of Groningen, Oostersingel 59,9700 RB Groningen, The Netherlands.
48
Postrna et al. TABLE 1. Histological Diagnosis and Type of Surgery in 33 Patients With a Malignant Bone Tumor Amputation Limb salvage
Above-knee
Below-knee
Total
14
II 1
3
28 2 2
~~
Osteosarcotna Malignant fibrous histiocytoind Synovia sarconia Ewing sarcoma
I 2 1
-
Total
14
eligible. The interval of two years was chosen to rule out effects of postoperative complications and/or chemotherapy related toxicity on quality of life. Two patients were excluded: one because he was mentally defective and one because of medical complications requiring hospital admission at the time of the study. Three patients refused to participate; 33 patients participated after informed consent by telephone. Histological diagnoses and type of surgery are shown in Table 1. Limb-saving surgery included radical resection of the tumor bearing bone and soft tissues and implantation of an endoprosthesis. Indications for limb saving surgery were no tumor invasion in neurovascular structures and anticipation of adequate function of the leg following tumor resection. Patients who were not eligible for limb-saving surgery underwent an amputation. According to Dutch insurance policy external prostheses were substituted every 2 years and met modern requirements. All patients except one received systemic chemotherapy according to various protocols. No patient had radiotherapy.
Methods Quality of life is a very complex concept that cannot be determined by one single test. Both objective physical symptoms as well as subjective experiences contribute to it substantially [ 5 ] .As we were mainly interested in quality of life, as experienced by the patients personally, no quantitative functional assessment of the limb was done. We selected a battery of standardized self-report questionnaires that measured psychoneurotical and somatical distress, (restriction in) activities of daily living and selfesteem. All questionnaires had been validated for the Dutch population: I . The Hopkins Symptom CheckList (HSCL) assesses psychoneurotical distress and somatization by means of a total score and a psychological and a somatic subscale. Higher scores indicate more symptoms [6,7]. 2. The Groningen Activity Restriction Scale (GARS) is a hierarchical scale comprising 18 activities of
19
I
33
daily living (ADL) and instrumental activities of daily living (IADL) [8]. 3 . For estimation of self-esteem, we used a shortened version of the self esteem scale, developed by Rosenberg [9,lOl. Higher scores indicate a favorable attitude toward oneself. 4. The patients were visited at home by one of two graduate medical students for a semistructured interview, during which information was collected on educational and vocational impacts of treatment, marital status, possibility to move independently, some aspects of costs of living, and participation in social life. They were asked to comment on the psychological impact of treatment for each of them personally. 5 . Satisfaction on quality of life and individual perception of being disabled were rated on a 10-cm visual analog scale.
Statistical Tests Used We chose to analyze the data with nonparainetric tests because ( 1) the population was not normally distributed, and (2) the measurements were not as strong as an interval scale [ 1 I ] . All analyses were carried out on a personal computer, using SPSSIPC-t (M.J. Norusis/SPSS Inc., 1990). Besides the descriptive statistics, the chi-square test for 2 X 2 tables and the Mann-Whitney test and Student’s t-test were used.
RESULTS The characteristics of the 33 patients who participated in the study are summarized in Table 11. Amputation patients are somewhat older and the interval since surgery is longer compared with the limb salvage group, as some of them were diagnosed before limb salvage surgery had been introduced in our hospital.
Self-Report Questionnaires There were no statistically significant differences between the limb salvage patients and the amputation patients in psychological and physical distress, activities of daily living (GARS) and self-esteem, nor were they dif-
Quality of Life in Bone Tumor Patients TABLE 11. Characteristics of 33 Patients With a Malignant Bone Tumor
No. Sex Median age at time of study (yr) Range Median age at surgery (yr) Range Median interval since surgery (yr) Range
Limb salvage
Amputation
14
19
IOM, 4F 24 ( 13-56)
8M, IIF 27 (2 1-53)
14
17
( 1045)
(843) II (5-17)
9 (2-12)
49
reaction to stimuli such as colors and flavors which reminded them of former chemotherapy.
Visual Analog Scales The mean value for quality of life as indicated on a 10-cm scale was 7.5 for limb salvage patients and 7.1 for amputees. Mean value for perception of being disabled was 7 for limb salvage and 7.1 for amputation patients. Although there were no differences between the groups, both groups apparently felt a diminution of quality of life as well as a sense of disability as measured on this scale (Fig. 1.).
DISCUSSION Although it still is a general assumption that limbferent from normal. If anything, a trend toward more saving surgery in adolescent and adult lower-extremity physical symptoms, as measured by the HSCL somatic bone tumor patients will afford a profound quality of life subscale, was found in the limb-salvage group, as well as advantage compared to amputation, with the tests we a trend toward lower-self esteem in the amputation group employed no statistically significant differences could be (Table 111). Restriction of the amputation group to above- substantiated. These results are in agreement with the knee amputees did not influence the results. studies of Sugarbaker and Weddington and their colleagues [3,4], whose study populations were more heterSemistructural Interviews ogeneous with a considerably shorter follow-up than our The information collected during the interviews re- patient population. As patient numbers in our study were vealed that educational achievement was comparable in small, the results were characterized by high standard both groups and ranged from lowest to highest level of deviations, limiting the value of tests for statistical signifeducation. Twenty-eight percent of limb-salvage patients icance. In addition the predominance of females in the had not yet finished school or high school, compared to amputation group, which is assumed to be accidental, 10% of patients in the amputation group. Sixty-four per- may have affected some of the results. Because of the cent of the patients with limb salvage needed occupa- small numbers the results were not evaluated for limb tional resettlement due to physical limitations compared salvage and amputation with respect to sex groups or to to 26% of amputation patients. Nearly all patients were level of amputation. However, evaluation of only the able to move independently, most of them having a car above-knee amputees instead of the entire amputation available. A crutch or cane was used by 50% of limb group compared to limb salvage patients did not affect the salvage patients, compared to 75% of amputees. The results. The results of the HSCL somatical subscale suggest need for facilities at home, for instance an elevator or lavatory accomodations, was similar in both groups that limb salvage patients suffer from more somatic (40%). Many patients reported high expenses for shoes symptoms compared to amputation patients and also to (50% of limb salvage patients) and/or trousers (75% of healthy people. This is consistent with our experience amputation patients) because of abnormal and uneven that many patients who received an endoprosthesis comwear and tear. Forty-two percent of limb-salvage patients plain from slight or moderate pain in the affected leg and were engaged to be married, compared to 68% of ampu- usually so-called “starting pain.” In addition, impairment tees. Patients who were single at diagnosis were asked in joint motion and muscle strength, often contribute to whether they considered it difficult to find a partner com- physical discomfort. The performance of activities of daily living (GARS) is pared to normal people. Sixty-five percent of amputatees answered “yes” compared to only one of the limb salvage considered worth mentioning, as it is nearly normal in patients which was a significant difference ( P < 0.05). both patient groups, despite the presence of severe disSixty-five percent of amputees felt embarrassed to show abilities. However the GARS, the only ADL list we were the prosthesis, and isolated themselves from various so- aware of that was standardized and validated for the cial activities (for instance sports). These limitations Dutch population, was developed for the elderly, who do were denied by the limb salvage patients. Fifty-five per- not adjust to disabilities as easily as adolescents. Alcent of all patients mentioned accelerated mental matura- though this questionnaire did not discriminate between tion, but 6% thought they came out more unbalanced than limb salvage patients and amputees, the overall results they were before. In 25% of our patients anorexia, nausea confirm those of Boyle and Tebbi and colleagues [ 1,2], and even vomiting still occurred as a persistent Pavlovian who found adjustment to amputation among adolescent
50
Postma et al.
TABLE 111. Results of Self-Report Questionnaires in 33 Patients With a Malignant Bone Tumor After Limb Salvage or Amputation Procedures* Limb salvage (n = 14)
Amputation (n = 19)
Normal range“
26.3 2 17.9 28 (2-57)
20.5 i 18.7 18 (G89)
8-33
8.2 2 6.2 8 (1-19)
6.9 5 7.3 4 (1-31)
3-1 1
HSCL somat. Mean Median Range
3.4 ’’ 3.9 2.5 (G12)
1.95 2 2.04 I (G7)
G2
GARS Mean *SD Median Range
24.2 i 8.6 21.5 (1848)
20.8 +- 4.2 19 ( 18-35)
18
HSCL total score m a n ?SD Median Range HSCL psych. Mean 2 S D Median Range
Self-esteem Mean i S D Median Range
NS
NS
NS
NS
7.9 i 2.7 7 (5-13)
X.8 2 2.58 8.5
(5-13)
Statisticalh N significance
NS 8.4
* SD.standard deviation; HSCL, Hopkins Symptom Checklist; GAKS, Groningen Activities Restriction Scale. “Nornial range includes average, higher than average, and lower than average scales. hMann-Whitney test, or Student’s t-teat, NS: P < 0.05.
a>
A - L-
Quality of l i f e I 0
1
10
\ Perception of being disabled
LA
--
9,
I
0
I 0
10
1
1
1
I
2
I
I
3
1
1
4
1
5
’
1
6
I
l
7
l
l
8
l
l
’
9
l
10
Fig. I . Visual analog rating scales of subjective quality of life (a) and perception of being disabled (b) in 33 patients with a malignant bone tumor. L, Limb salvage; A. amputation. a: 0 indicates lowest possible quality of life, 10 indicates highest quality. Mean value L 7.5 (rangc 4.1-10). mean value A 7.1 (range 3.6-9.4). b: 0 indicates patient feels severely disabled, 10 indicates patient feels not at all disabled. Mean value L 7 (range 4.9-9.7), mean value A 7 . I (range 4.7-10).
cancer survivors to be good. Limb-salvage patients are advised to avoid heavy exercise of the legs to save the endoprosthesis. For more than one-half of the patients
this resulted in vocational resettlement to “white collar” jobs. Although amputations by nature bring about similar restrictions, the amputees apparently did not feel forced
Quality of Life in Bone Tumor Patients to reconsider their career. Limb salvage patients are pre-
scribed to use a crutch or a cane when walking outside for security reasons. It is interesting to find that this is actually done by only 50% of the patients. One might wonder whether an advice that is disregarded so widely, still is worthwhile. In the amputation group there was a trend to lower self esteem (see Table HI), compared to limb salvage patients and compared to healthy adolescents. In addition, patients in this group experienced obvious inhibitions in social life, as was apparent from the interviews. These findings could support the cosmetic advantage of limb salvage compared to amputation. Both groups, limb salvage and amputation patients, felt a diminution of quality of life as well as disability as measured on the visual analog scale. As far as we know, this is the first quantitative report of this information.
CONCLUSION Quality of life in bone tumor patients is affected by limb salvage as well as amputation. The presumed differences in self esteem and social behavior suggest that there is a quality-of-life advantage of limb salvage compared to amputation, although this could not be substantiated by statistical significance. Future research on quality of life of bone cancer survivors should include prospective evaluation of body image and self-esteem and its impact on social skills. ACKNOWLEDGMENTS This study was supported by the Foundation of Pediatric Oncology Groningen (SKOG). The interviews were performed by H. Hegge and S . Thorn Broers. The authors wish to thank B. Gauw for secretarial help. REFERENCES I . Boyle M, Tebbi CK, Mindell ER, Mettlin CJ: Adolescent adjustment to amputation. Med Pediatri Oncol 10:301-312, 1982. 2. Tebbi CK, Petrelli AS, Richards ME: Adjustment to amputation among adolescent oncology patients. Am J Pediatr Hematol Oncol 11:27&280, 1989. 3. Sugarbaker PH, Barofsky I, Rosenberg SA, Gianola FJ: Quality of life assessment of patients in extremity sarcoma clinical trials. Surgery 91:17-23, 1982. 4. Weddington WW, Segrdves KB, Simon MA: Psychological outcome of extremity sarcoma survivors undergoing amputation or limb salvage. J CIin Oncol 3:1393-1399, 1985. 5 . De Haes JCJM, Van Knippenberg FCE: The quality of life of cancer patients: A review of the literature. Soc ScI Med 20:809817, 1985.
51
6. Derogatis LR: The Hopkins Symptom Checklist. Pharmacopsychiatry 7:79-1 10, 1974. 7. Luteijn F, Hamel LF. Bouwman TK, Kok AR: “HSCL Hopkins Symptom Checklist, handleiding.” Lisse, The Netherlands, Swets and Zeitlinger B.V., 1984. 8. Kempen GUM, Suurmeijer TPBM: The development of a hierarchical polychotomous ADL-IADL scale for non institutionalized elders. Gerontologist 30:497-502, 1990. 9. Rosenberg M: “Society and the Adolescent Self-Image.” Princeton, NJ: Princeton University Press, 1965. 10. Kienhorst CWM, De Wilde EJ, Van den Bont J , Diekstra RFW: Psychometrische eigenschappen van een aantal zelfrapportagevragenlijsten over “(on)welbevinden.” Ned T Psych 45: 12&133, 1990. I I . Siege1 S, Castellan NJ: “Nonparametric Statistics for the Behavioral Sciences.” New York: McGraw-Hill. 1988.
EDITORIAL COMMENTS This paper deals with the difficult topic of psychosocia1 adjustment of patients with bone tumors following limb salvage or amputation. Apart from the purely mechanical aspects of locomotion that are amenable to more of less precise measurement, the psychological and social aspects of adjustment are more difficult to quantitate. Nevertheless, the authors have been able, using the available methodology to provide some useful information. No statistically significant differences were found between the two groups, which is due, partly at least, to the small number of patients. In terms of physical activities or physical complaints, the amputees were doing as well as the limb-salvage patients. However, among the single patients, 65% of the amputees reported difficulty in developing relations with the opposite sex, whereas only one of the limb-salvage patients did so. Also 65% of the amputees felt embarrassed to show their prosthesis and restricted themselves from certain social activities, whereas none of the limb salvage patients did so. The findings of this article support the common perception that, if in no other terms, there is a cosmetic advantage with limb salvage with corresponding psychological repercussions. The surgeon, however, should not forget that control of the disease remains the primary goal, and selection of the patients for limb salvage is very important. Constantine P. Karakousis, Roswell Park Cancer Institute Buffalo, New York 14263
MD, Phi)
Quality of Life in Bone Tumor Patients Comparing Limb Salvage and Amputation of the Lower Extremity ALEIDA POSTMA, MU, ANNET KINGMA, MSC,JOHAN H. DE RUITER, MA, HEIMENSCHRAFFORDT KOOPS, MU, RENE P.H. VETH, MD, LUDWIG N.H. GOEKEN, MD, AND WILLEM A. KAMPS, MD From the Departments of Pediatric Oncology (A.P., A.K., W.A.K.), Surgical Oncology (H.S.K.), Orthopedics (R.P.H.V.), and Rehabilitation (L.N.H.C.), University Hospital, Cronrngen, and the Department of Health Science (1.H.d.R.), State University, Croningen, The Netherlands
In 33 long-term survivors of lower extremity bone cancer quality-of-life data were studied following limb salvage compared to amputation. Selfreport questionnaires, semistructured interviews and visual analog scales were used to measure psychoneurotic and somatical distress, activities of daily living, self-esteem, and adjustment to illness. Fourteen patients with limb salvage (age 13-56 years, median 24) and 19 patients with an amputation (age 21-53 years, median 27) were evaluated 2-17 years (median 10 years) after surgery. The differences between the two groups were not statistically significant. However, physical complaints were reported more often by limb salvage patients, whereas the amputees showed a trend toward lower self-esteem and isolation in social life, due to their disability. Both groups felt equal diminution of quality of life and disability as measured on the visual analog scale. These findings could support the cosmetic advantage of limb salvage compared to amputation. 0 1992 Wiley-Liss, Inc.
KEYWORDS:psychosocial adjustment, self-esteem, disability, limb salvage, amputation
INTRODUCTION With increasing patient survival in oncology the psychosocial consequences of treatment become increasingly important. In surgical management of malignant bone tumors many centers prefer the limb-saving approach above amputation because of the anticipated quality of life advantage. As malignant bone tumors mainly occur during adolescent life, when body image is of particular importance, amputation might complicate normal psychosocial development and have an adverse effect on quality of life. However, two studies evaluating the psychosocial effects of amputation on adolescent cancer patients demonstrated that the overall adjustment appeared to be good [ 1,2]. Sugarbaker et al. [3] and Weddington et al. [4] evaluated the impact of limb sparing surgery versus amputation in extremity sarcoma patients. Both studies failed to demonstrate a significant difference between 0 1992 Wiley-Liss, Inc.
the two treatment modalities. Both studies were performed shortly after surgery (mean time lapse G 3 years) and apply to adult patients with upper and lower extremity sarcomas. The purpose of our study was to compare long-term quality-of-life data in lower limb bone tumor patients, including adolescents who underwent limb salvage versus amputation.
PATIENTS AND METHODS Patients All patients aged 12 years and older with no evidence of disease who were more than 2 years after definitive surgery for a lower limb malignant bone tumor, were Accepted for publication May IS, 1992 Address reprint requests t o Dr. Aleida Postma, Dcpartment of Pediatric Oncology, University Hospital, University of Groningen, Oostersingel 59,9700 RB Groningen, The Netherlands.
48
Postrna et al. TABLE 1. Histological Diagnosis and Type of Surgery in 33 Patients With a Malignant Bone Tumor Amputation Limb salvage
Above-knee
Below-knee
Total
14
II 1
3
28 2 2
~~
Osteosarcotna Malignant fibrous histiocytoind Synovia sarconia Ewing sarcoma
I 2 1
-
Total
14
eligible. The interval of two years was chosen to rule out effects of postoperative complications and/or chemotherapy related toxicity on quality of life. Two patients were excluded: one because he was mentally defective and one because of medical complications requiring hospital admission at the time of the study. Three patients refused to participate; 33 patients participated after informed consent by telephone. Histological diagnoses and type of surgery are shown in Table 1. Limb-saving surgery included radical resection of the tumor bearing bone and soft tissues and implantation of an endoprosthesis. Indications for limb saving surgery were no tumor invasion in neurovascular structures and anticipation of adequate function of the leg following tumor resection. Patients who were not eligible for limb-saving surgery underwent an amputation. According to Dutch insurance policy external prostheses were substituted every 2 years and met modern requirements. All patients except one received systemic chemotherapy according to various protocols. No patient had radiotherapy.
Methods Quality of life is a very complex concept that cannot be determined by one single test. Both objective physical symptoms as well as subjective experiences contribute to it substantially [ 5 ] .As we were mainly interested in quality of life, as experienced by the patients personally, no quantitative functional assessment of the limb was done. We selected a battery of standardized self-report questionnaires that measured psychoneurotical and somatical distress, (restriction in) activities of daily living and selfesteem. All questionnaires had been validated for the Dutch population: I . The Hopkins Symptom CheckList (HSCL) assesses psychoneurotical distress and somatization by means of a total score and a psychological and a somatic subscale. Higher scores indicate more symptoms [6,7]. 2. The Groningen Activity Restriction Scale (GARS) is a hierarchical scale comprising 18 activities of
19
I
33
daily living (ADL) and instrumental activities of daily living (IADL) [8]. 3 . For estimation of self-esteem, we used a shortened version of the self esteem scale, developed by Rosenberg [9,lOl. Higher scores indicate a favorable attitude toward oneself. 4. The patients were visited at home by one of two graduate medical students for a semistructured interview, during which information was collected on educational and vocational impacts of treatment, marital status, possibility to move independently, some aspects of costs of living, and participation in social life. They were asked to comment on the psychological impact of treatment for each of them personally. 5 . Satisfaction on quality of life and individual perception of being disabled were rated on a 10-cm visual analog scale.
Statistical Tests Used We chose to analyze the data with nonparainetric tests because ( 1) the population was not normally distributed, and (2) the measurements were not as strong as an interval scale [ 1 I ] . All analyses were carried out on a personal computer, using SPSSIPC-t (M.J. Norusis/SPSS Inc., 1990). Besides the descriptive statistics, the chi-square test for 2 X 2 tables and the Mann-Whitney test and Student’s t-test were used.
RESULTS The characteristics of the 33 patients who participated in the study are summarized in Table 11. Amputation patients are somewhat older and the interval since surgery is longer compared with the limb salvage group, as some of them were diagnosed before limb salvage surgery had been introduced in our hospital.
Self-Report Questionnaires There were no statistically significant differences between the limb salvage patients and the amputation patients in psychological and physical distress, activities of daily living (GARS) and self-esteem, nor were they dif-
Quality of Life in Bone Tumor Patients TABLE 11. Characteristics of 33 Patients With a Malignant Bone Tumor
No. Sex Median age at time of study (yr) Range Median age at surgery (yr) Range Median interval since surgery (yr) Range
Limb salvage
Amputation
14
19
IOM, 4F 24 ( 13-56)
8M, IIF 27 (2 1-53)
14
17
( 1045)
(843) II (5-17)
9 (2-12)
49
reaction to stimuli such as colors and flavors which reminded them of former chemotherapy.
Visual Analog Scales The mean value for quality of life as indicated on a 10-cm scale was 7.5 for limb salvage patients and 7.1 for amputees. Mean value for perception of being disabled was 7 for limb salvage and 7.1 for amputation patients. Although there were no differences between the groups, both groups apparently felt a diminution of quality of life as well as a sense of disability as measured on this scale (Fig. 1.).
DISCUSSION Although it still is a general assumption that limbferent from normal. If anything, a trend toward more saving surgery in adolescent and adult lower-extremity physical symptoms, as measured by the HSCL somatic bone tumor patients will afford a profound quality of life subscale, was found in the limb-salvage group, as well as advantage compared to amputation, with the tests we a trend toward lower-self esteem in the amputation group employed no statistically significant differences could be (Table 111). Restriction of the amputation group to above- substantiated. These results are in agreement with the knee amputees did not influence the results. studies of Sugarbaker and Weddington and their colleagues [3,4], whose study populations were more heterSemistructural Interviews ogeneous with a considerably shorter follow-up than our The information collected during the interviews re- patient population. As patient numbers in our study were vealed that educational achievement was comparable in small, the results were characterized by high standard both groups and ranged from lowest to highest level of deviations, limiting the value of tests for statistical signifeducation. Twenty-eight percent of limb-salvage patients icance. In addition the predominance of females in the had not yet finished school or high school, compared to amputation group, which is assumed to be accidental, 10% of patients in the amputation group. Sixty-four per- may have affected some of the results. Because of the cent of the patients with limb salvage needed occupa- small numbers the results were not evaluated for limb tional resettlement due to physical limitations compared salvage and amputation with respect to sex groups or to to 26% of amputation patients. Nearly all patients were level of amputation. However, evaluation of only the able to move independently, most of them having a car above-knee amputees instead of the entire amputation available. A crutch or cane was used by 50% of limb group compared to limb salvage patients did not affect the salvage patients, compared to 75% of amputees. The results. The results of the HSCL somatical subscale suggest need for facilities at home, for instance an elevator or lavatory accomodations, was similar in both groups that limb salvage patients suffer from more somatic (40%). Many patients reported high expenses for shoes symptoms compared to amputation patients and also to (50% of limb salvage patients) and/or trousers (75% of healthy people. This is consistent with our experience amputation patients) because of abnormal and uneven that many patients who received an endoprosthesis comwear and tear. Forty-two percent of limb-salvage patients plain from slight or moderate pain in the affected leg and were engaged to be married, compared to 68% of ampu- usually so-called “starting pain.” In addition, impairment tees. Patients who were single at diagnosis were asked in joint motion and muscle strength, often contribute to whether they considered it difficult to find a partner com- physical discomfort. The performance of activities of daily living (GARS) is pared to normal people. Sixty-five percent of amputatees answered “yes” compared to only one of the limb salvage considered worth mentioning, as it is nearly normal in patients which was a significant difference ( P < 0.05). both patient groups, despite the presence of severe disSixty-five percent of amputees felt embarrassed to show abilities. However the GARS, the only ADL list we were the prosthesis, and isolated themselves from various so- aware of that was standardized and validated for the cial activities (for instance sports). These limitations Dutch population, was developed for the elderly, who do were denied by the limb salvage patients. Fifty-five per- not adjust to disabilities as easily as adolescents. Alcent of all patients mentioned accelerated mental matura- though this questionnaire did not discriminate between tion, but 6% thought they came out more unbalanced than limb salvage patients and amputees, the overall results they were before. In 25% of our patients anorexia, nausea confirm those of Boyle and Tebbi and colleagues [ 1,2], and even vomiting still occurred as a persistent Pavlovian who found adjustment to amputation among adolescent
50
Postma et al.
TABLE 111. Results of Self-Report Questionnaires in 33 Patients With a Malignant Bone Tumor After Limb Salvage or Amputation Procedures* Limb salvage (n = 14)
Amputation (n = 19)
Normal range“
26.3 2 17.9 28 (2-57)
20.5 i 18.7 18 (G89)
8-33
8.2 2 6.2 8 (1-19)
6.9 5 7.3 4 (1-31)
3-1 1
HSCL somat. Mean Median Range
3.4 ’’ 3.9 2.5 (G12)
1.95 2 2.04 I (G7)
G2
GARS Mean *SD Median Range
24.2 i 8.6 21.5 (1848)
20.8 +- 4.2 19 ( 18-35)
18
HSCL total score m a n ?SD Median Range HSCL psych. Mean 2 S D Median Range
Self-esteem Mean i S D Median Range
NS
NS
NS
NS
7.9 i 2.7 7 (5-13)
X.8 2 2.58 8.5
(5-13)
Statisticalh N significance
NS 8.4
* SD.standard deviation; HSCL, Hopkins Symptom Checklist; GAKS, Groningen Activities Restriction Scale. “Nornial range includes average, higher than average, and lower than average scales. hMann-Whitney test, or Student’s t-teat, NS: P < 0.05.
a>
A - L-
Quality of l i f e I 0
1
10
\ Perception of being disabled
LA
--
9,
I
0
I 0
10
1
1
1
I
2
I
I
3
1
1
4
1
5
’
1
6
I
l
7
l
l
8
l
l
’
9
l
10
Fig. I . Visual analog rating scales of subjective quality of life (a) and perception of being disabled (b) in 33 patients with a malignant bone tumor. L, Limb salvage; A. amputation. a: 0 indicates lowest possible quality of life, 10 indicates highest quality. Mean value L 7.5 (rangc 4.1-10). mean value A 7.1 (range 3.6-9.4). b: 0 indicates patient feels severely disabled, 10 indicates patient feels not at all disabled. Mean value L 7 (range 4.9-9.7), mean value A 7 . I (range 4.7-10).
cancer survivors to be good. Limb-salvage patients are advised to avoid heavy exercise of the legs to save the endoprosthesis. For more than one-half of the patients
this resulted in vocational resettlement to “white collar” jobs. Although amputations by nature bring about similar restrictions, the amputees apparently did not feel forced
Quality of Life in Bone Tumor Patients to reconsider their career. Limb salvage patients are pre-
scribed to use a crutch or a cane when walking outside for security reasons. It is interesting to find that this is actually done by only 50% of the patients. One might wonder whether an advice that is disregarded so widely, still is worthwhile. In the amputation group there was a trend to lower self esteem (see Table HI), compared to limb salvage patients and compared to healthy adolescents. In addition, patients in this group experienced obvious inhibitions in social life, as was apparent from the interviews. These findings could support the cosmetic advantage of limb salvage compared to amputation. Both groups, limb salvage and amputation patients, felt a diminution of quality of life as well as disability as measured on the visual analog scale. As far as we know, this is the first quantitative report of this information.
CONCLUSION Quality of life in bone tumor patients is affected by limb salvage as well as amputation. The presumed differences in self esteem and social behavior suggest that there is a quality-of-life advantage of limb salvage compared to amputation, although this could not be substantiated by statistical significance. Future research on quality of life of bone cancer survivors should include prospective evaluation of body image and self-esteem and its impact on social skills. ACKNOWLEDGMENTS This study was supported by the Foundation of Pediatric Oncology Groningen (SKOG). The interviews were performed by H. Hegge and S . Thorn Broers. The authors wish to thank B. Gauw for secretarial help. REFERENCES I . Boyle M, Tebbi CK, Mindell ER, Mettlin CJ: Adolescent adjustment to amputation. Med Pediatri Oncol 10:301-312, 1982. 2. Tebbi CK, Petrelli AS, Richards ME: Adjustment to amputation among adolescent oncology patients. Am J Pediatr Hematol Oncol 11:27&280, 1989. 3. Sugarbaker PH, Barofsky I, Rosenberg SA, Gianola FJ: Quality of life assessment of patients in extremity sarcoma clinical trials. Surgery 91:17-23, 1982. 4. Weddington WW, Segrdves KB, Simon MA: Psychological outcome of extremity sarcoma survivors undergoing amputation or limb salvage. J CIin Oncol 3:1393-1399, 1985. 5 . De Haes JCJM, Van Knippenberg FCE: The quality of life of cancer patients: A review of the literature. Soc ScI Med 20:809817, 1985.
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6. Derogatis LR: The Hopkins Symptom Checklist. Pharmacopsychiatry 7:79-1 10, 1974. 7. Luteijn F, Hamel LF. Bouwman TK, Kok AR: “HSCL Hopkins Symptom Checklist, handleiding.” Lisse, The Netherlands, Swets and Zeitlinger B.V., 1984. 8. Kempen GUM, Suurmeijer TPBM: The development of a hierarchical polychotomous ADL-IADL scale for non institutionalized elders. Gerontologist 30:497-502, 1990. 9. Rosenberg M: “Society and the Adolescent Self-Image.” Princeton, NJ: Princeton University Press, 1965. 10. Kienhorst CWM, De Wilde EJ, Van den Bont J , Diekstra RFW: Psychometrische eigenschappen van een aantal zelfrapportagevragenlijsten over “(on)welbevinden.” Ned T Psych 45: 12&133, 1990. I I . Siege1 S, Castellan NJ: “Nonparametric Statistics for the Behavioral Sciences.” New York: McGraw-Hill. 1988.
EDITORIAL COMMENTS This paper deals with the difficult topic of psychosocia1 adjustment of patients with bone tumors following limb salvage or amputation. Apart from the purely mechanical aspects of locomotion that are amenable to more of less precise measurement, the psychological and social aspects of adjustment are more difficult to quantitate. Nevertheless, the authors have been able, using the available methodology to provide some useful information. No statistically significant differences were found between the two groups, which is due, partly at least, to the small number of patients. In terms of physical activities or physical complaints, the amputees were doing as well as the limb-salvage patients. However, among the single patients, 65% of the amputees reported difficulty in developing relations with the opposite sex, whereas only one of the limb-salvage patients did so. Also 65% of the amputees felt embarrassed to show their prosthesis and restricted themselves from certain social activities, whereas none of the limb salvage patients did so. The findings of this article support the common perception that, if in no other terms, there is a cosmetic advantage with limb salvage with corresponding psychological repercussions. The surgeon, however, should not forget that control of the disease remains the primary goal, and selection of the patients for limb salvage is very important. Constantine P. Karakousis, Roswell Park Cancer Institute Buffalo, New York 14263
MD, Phi)
