Sm. Sci. Med. Vol. 32, No. 12, pp. 1337-1340, Printed in Great Britain
0277-9536191 $3.00 + 0.00 Pergamon Press plc
1991
THE QUALITY OF LIFE OF CANCER PATIENTS WHO REFUSE CHEMOTHERAPY* ORA GILBAR University of Haifa and Department of Oncology, Linn Clinic, Mount Cannel, Haifa, Israel Abstract-The
study compared the quality of life of 51 cancer patients who dropped out of chemotherapy, 19 who refused treatment and a further 70 patients who had completed chemotherapy. The patients were treated in five oncological institutes in Israel. The findings of this study indicate that the quality of life of patients who refuse chemotherapy is no different from that of patients who drop out of treatment or patients who complete treatment. The findings also show that the quality of life of the patients who drop out of treatment is worse than that of patients who complete chemotherapy.
Many doctors have encountered the situation in which cancer patients refuse to receive chemotherapy after having been given an explanation of the purpose of the treatment, its side-effects and its efficacy. Each type of treatment produces various combinations of several disturbing symptoms, the most common being nausea, vomiting, hair loss, fatigue and weakness. The side-effects affect the patient’s quality of life in daily functioning at work, sexual relationships and domestic and social environments. They also create psychosocial distress [l-3]. Many studies have dealt with the quality of life of cancer patients. Some of them have focused on the aspect of the physical complaints of quality of life [4-6]. A few studies have dealt with the quality of life from the viewpoint of psychological distress, social interaction and functional status of patients receiving chemotherapy [7-l 11. However, no research has examined the question of whether the patient’s quality of life is related to his decision to refuse to receive treatment. The answer to this appears easy, as patients explain their refusal to receive treatment by their preference to maintain their quality of life even at the cost of shortening their lifespan. But if that were the case it would be reasonable to assume that the rate of patients refusing chemotherapy would be higher than the rates reported in the literature: 30% in cases of breast cancer, and 30-50% in other forms of cancer [ll-151. From the few instances in which the phenomenon of refusal to receive chemotherapy has been studied, several researchers have pointed to the mental condition of the patient influencing the refusal of or dropout from chemotherapy. Mental disorders such as psychosis, depression, and dementia can be reasons for the refusal to receive chemotherapy [16]. It is claimed that psychological distress resulting from exhaustion, weakness, pain and depression cause a stop of chemotherapy or a demand to reduce the level of therapy [17]. Patients who suffered conditional vomiting during treatment reported higher levels of emotional depression, and this influenced their *Due to circumstances beyond the Publisher’s control, this article appears in print without author corrections,
decision to reduce the volume of the treatment or to stop the therapy completely. Other researchers have indicated the level of patient’s belief in the doctor and in the treatment as factors which influence the decision to refuse or dropout from treatment. Holland [18] found that 54% of the population studied reported that their belief in the doctor was the main reason for their agreement to receive chemotherapy. A similar finding was reported by Penman, Bahn et al. [19], who found that 86% of a sample of 51 patients gave their belief in their doctor as the principal reason for their agreement to receive treatment. We studied the connection between the dropout of patients from chemotherapy and their adjustment to illness, and found that it was worse than adjustment to illness by patients who completed chemotherapy
w1.
Consequently, the aim of the present research was to examine if there was any connection between refusal to receive and drop out from chemotherapy and quality of life. The term ‘quality of life’ includes (according to Aaronson and Bullanger [21]) psychological distress (e.g. fear, depression and hostility), social interaction (e.g. quality and quantity of relationships with significant others) and functional status (e.g. vocational activity). Additional factors that have been proposed for quality of life assessments include sexuality, body image and satisfaction with medical care. The research did not relate to the physiological aspects of the quality of life of the patients who refused chemotherapy. In this pilot study, therefore, our question was whether the quality of life of patients who refused chemotherapy differed from that of those who dropped out and those who completed chemotherapy.
SUBJECTS
AND METHODS
Subjects The research comprised patients who were under treatment in five oncological institutions in Israel. Of a total of 90 patients who refused or dropped out of chemotherapy who were treated in 1983, 14 refused to be interviewed, three could not be interviewed owing to language problems and three were too
1337
1338
ORAGILBAR Table 1. Patient’s background Drop out
Age Education (yr)
Refuse
Mean
SD
N
Mean
SD
N
Mean
SD
51 51
50.86 10.12
12.96 3.19
19 19
58.31 10.79
15.06 3.81
70 70
53.91 10.69
14.45 3.25
ill. Out of 70 patients 51 dropped out of treatment and 19 refused to have chemotherapy. The third group was selected randomly from the patients who completed chemotherapy and pair-matching, controlling for sex, age (+ 5 year) time of cancer diagnosing and stage of disease, type of chemotherapy, and when treatment had taken place (within a year). The final group numbered 70 patients. Table 1 presents the background of the patients. No statistically significant differences were found between the groups. Table 2 presents the diagnosis of the patients according to two categories: Breast cancer patients and other kinds of diagnosed cancer, such as Hodgkin’s disease, stomach cancer, sarcoma, colon cancer, lymphoma, uterine cancer, ovarian cancer and face cancer. No statistical significance difference was found between the groups. Method
The patients were all interviewed at home by experienced social workers. The patients who refused chemotherapy were interviewed immediately after stating that they did not want to receive chemotherapy. Those who dropped out of chemotherapy were interviewed at home immediately after taking the decision. Those who completed the chemotherapy were interviewed no more than 2 weeks after they received the last course of the treatment. Two questionnaires were used to measure the quality of life. 1. The Psychosocial Adjustment to Physical Illness Scales (PAIS) was used to assess adjustment to illness [22]. It includes 45 items, each composed of four statements scored on a 4-point scale ranging from 0 (no problems) to 3 (many difficulties). The questionnaire covers seven dimensions, including health, environment, vocational rehabilitation, domestic environment, etc. The scale thus provides information on global adjustment (ranging from 0 to 141) as well as adjustment by specific areas. 2. The Brief Symptoms Inventory (BSI) was used to assess psychosocial distress 1231. This scale is abbreviated from the SCL-90, and correlates highly with it. It contains 53 items, each describing a feeling or thought, and is scored on a 5-point scale ranging from 0 (no such problem) to 4. The inventory is composed of 9 symptom areas such as depression, hostility, etc. Thus it provides information about global psychological distress generally as well as specifically (the sub-scales). Table 2. Patient’s diannosis Drop out
Refuse
Complete
Breast cancer Other diagnosis
26 25
10 9
36 34
72 68
Total (%)
51 36.5
19 13.6
70 50
140 100
Group
Complete
N
RESULTS
Comparison of the three groups was carried out using Scheffe’s test [24]. Table 3 presents the means and the SD on the PAIS (Psychosocial Adjustment to Physical Illness) scale of the patients who dropped out of treatment (group l), of the patients who refused chemotherapy (group 2) and of the patients who completed chemotherapy (group 3). There was no statistical difference between the patients who drop out of treatment and the patients who refuse chemotherapy although in 5 out of 7 areas the patients who drop out of treatment indicate more adjustment problems than the patients who refuse treatment. There was no statistical difference between the patients who refuse chemotherapy and patients who complete treatment although the patients who refuse chemotherapy indicated more adjustment problems than patients who complete the treatment. But a statistical difference was found between the patients who drop out of treatment and the patients who complete chemotherapy. The patients who drop out of treatment indicated more adjustment problems in five areas-Health-care Orientation, Vocational Environment, Domestic Environment, Social Environment, Psychosocial Distress-the difference between the two groups reached the level of significance. In other words, adjustment to illness among those who dropped out of treatment was worse than that among those who refused treatment and those who received the complete treatment. Table 4 presents the means and the SD on the BSI (Brief Symptoms Inventory) scale of the patients who dropped out of treatment (group l), The patients who refused chemotherapy (group 2) and the patients who completed chemotherapy (group 3). There is no statistical difference between the patients who drop out of treatment and the patients who refuse chemotherapy although in 8 out of 11 areas the patients who drop out of treatment have more psychological distress problems than the patients who refuse chemotherapy. Moreover, there is no statistical difference (except additional item) between the patients who refuse chemotherapy and the patients who complete treatment although the means of all areas indicate more psychological distress problems. But there is a statistical difference between patients who drop out of treatment and patients who complete treatment in 3 out of 1I-Gbsessive-Compulsive, Hostility, and Psychoticism and likewise on the Grand Severity Index; the differences between the two groups reach the level of statistical significance. Furthermore on the Grand Severity Index differences were found between the three groups.
Total DISCUSSION
The findings of this study indicate that the quality of life of patients who refuse chemotherapy is no
1339
‘fhe quality of life of cancer patients who refuse chemotherapy Table 3. Psychosocial adjustment to illness (PAIS)
Health care orientation Vocational environment Domestic environment Sexual relationship Extended family relation Social environment Psychological distress lP (1) (2) (3)
SD
N
Mean
SD
N
Mean
SD
4.39 4.15 3.92 5.52 1.81 5.94 5.21
19 6(l) 16 4(2) 19(3) 19 19
9.63 5.50 7.13 9.00 I .63 6.95 10.63
3.74 6.12 4.67 6.48 2.03 6.59 5.22
70 23 (I) 70 39(2) 68(3) 70 70
7.69’ 4.39. 4.919 5.92 1.15 4.17. 7.91’
3.52 4.61 4.24 5.51
Mean
::,,, :8 (2)
46 (3) 51 51
Complete
Refuse
Drop out N
Group domain
‘;::Y: 6.94. 9.03
1.37 7.41. 10.25’
1.88 4.96 4.67
< 0.05. A retired patient, students, and housewife did not answer this question. Patients refused to answer because they were embarrassed by the absence of a permanent partner. Patients with no family did not answer this question. Table 4. Psychological distress (BSI) Refuse
Drop out Group domain Somatization Obsessive compulsive lnterpenonal sensitivity Depression Anxiety Hostility Phobic anxiety Paranoid ideation Psychoticism Additional items Grand severity index (GSI)
Complete
N(1)
Mean
SD
N (2)
Mean
SD
N (2)
Mean
SD
49 49 49 49 49 49 49 49 49 49 49
1.34
0.90 0.91 0.95 0.85 1.01 0.83 0.77 0.73 0.68 0.84 30.15
17 17 17 17 17 17 17 17 17 17 17
1.23 0.89 0.83 1.25 1.06 0.89 0.58 0.75 0.76 I.500 50.64.
0.98 0.71 0.8 I 0.86 0.95 1.04 0.62 0.72 0.62 0.93 33.77
68 68 68 68 68 68 68 68 68 68 68
1.19 0.779 0.70 0.88 0.99 0.67’ 0.53 0.71 0.44. 0.81’ 37.47*
0.85 0.78 0.73 0.82 0.91 0.70 0.71 0.83 0.61 0.77 28.58
1.24’ 0.87 1.23 1.32 1.05. 0.80 0.8 I 0.86’ 1.03 45.72’
lP < 0.05.
(1) Two patients refused to complete BSI questionnaires. (2) Two patients refused to complete BSI questionnaires.
from that of patients who drop out of treatment or patients who complete treatment. The findings also show that the quality of life of the patients who drop out of treatment is worse than that of patients who complete chemotherapy. These findings are similar to those reported earlier [20]. In other words the quality of life of the patients who drop out of chemotherapy is worse than the quality of life of the patients who refuse chemotherapy (even though the differences are not significant), and the patients who complete chemotherapy. A possible explanation for the absence of differences in the quality of life of patients refusing chemotherapy on the one hand and those dropping out of/or completing treatment on the other, is that the quality of life of the former was from the outset worse than that of the latter. As a result the former refuse even to start the treatment, being afraid of any further negative influences on their quality of life. It should be noted that this research was retrospective, meaning that the quality of life was measured after the patients made their decision-to refuse treatment, to drop out, or to complete it. With such measurement it was impossible to isolate the effect caused by the psychological stress of the diagnosis and the surgery on the quality of life [25]. Another explanation for these findings is that the act of stopping treatment can influence the quality of life of those who take this step. In other words, those stopping treatment are likely to develop a strong feeling of failure in that they did not have the strength to complete the treatment. Feelings such as these are not found among those completing the treatment or among those refusing to receive treatment in the first place. If we add that in comparing those who stopped different
and those who completed treatment we found that the former are characterized by greater psychoiogical distress, we have a possible explanation for the findings of this research. From this viewpoint, for a patient who is judged likely to give up treatment it would be preferable not to start chemotherapy (from the viewpoint of quality of life). However, from a medical viewpoint, it is difficult to accept this conclusion, as dropout of chemotherapy might cause a reduction of survival. Therefore, our recommendation is to aid the patients receiving chemotherapy to preserve their quality of life. This can be achieved by learning coping skills. These skills include positive thinking, relaxation and guided imagination, setting short-term and long-term life goals, correct diet and body activity can contribute to maintaining the quality of life and, as such, perhaps prevent a decision to stop receiving treatment [26]. REFERENCES 1. Parker D. E. The employment cancer chemotherapy. Occup. Hlth Nursing 22-24, 1971. 2. Meyerowitz B. F., Spark F. C. et a/. Adjuvant
chemotherapy for breast carcinoma. Cancer 43, 1613-1618, 1979. 3. Wellisch D. K. Work Social recreation family and physical status. Cancer 58, 2290-2299, 1984. 4. Palmer B. V., Walsh G. A., McKinna, J. A. and Greening W. P. Adjuvant chemotherapy for breast cancer: side effects and quality of life. & Med. J. 281, 1594-1597, 1980. 5. Williams N. S. and Johnston D. The quality of life after rectal incision for low rectal cancer. Br. J. Surg. 70, 460-462, 1983.
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1340
6. Priestman T. J. and Baum M. Evaluation of quality of life in patients receiving treatment for advanced breast cancer. Lancet 24, 899-900, 1976. 7. Schmale A. H., Morrow G. R., Schmit M. H., Adler M., Murawski B. J. and Gates C. Well being of cancer survivors. Psychosoma Med. 45, 1983. 8. Sugarbaker P. H., Barofsky I., Rosenberg S. A. and Gianola F. J. Quality of life assessment of patients in extremity sarcoma clinical trials. Surgery 91, 17-23, 1982. 9. Schottenfeld D. and Robbins G. F. Quality of survival among patients who have had radical mastectomy. Cancer 26, 65M55,
1970.
10. Meyerowitz B. E., Watkins J. K. and Sparks Frank C. Quality of life for breast cancer patients receiving adjuvant chemotherapy. Am. J. Nursing 1983. 11. Love R. R., Leventhal H., Easterling D. V. and Nevenz D. R. Side effects and emotional distress during cancer chemotherapy. Cancer 63, 604-612, 1989; 232-235, 1983. 12. Liberati A., Colombo F., Franceschi S., Andreani A., Confalonier C. and La Vecchia C. Quality of breast cancer care in Italian general hospitals. Lancet 31, 259-260, 1982. 13. Glass A., Vieand H. B., Fisher B., Redmond C., Lemer H. and Walter J. Acute toxity during chemotherapy for breast cancer. The National Surgical Adjuvant Breast and Borvis Proiect, (NSHBP). Cancer Treat Rep. 65, 363-376, 1981. 14. Barofskv J.. Suearbaker P. H. and Mills M. E. Comnliante and quality of life assessment. In New Directions in Patient Compliance (Edited by Cohen S. J.), pp. 59-73. Lexington Books, London, 1979. 15. Lazlo J. and Lucas V. S. Emisis as critical problem
GILBAR
in chemotherapy. New Engl. J. Med. 305, 948-949, 1981. 16. Goldberg R. J. Systematic understanding of cancer patients who refuse treatment. Psychother. Psychosonst 39, 180-189,
1988.
17. Nereny D. R., Leventhal H. and Love R. R. Factors contributing to emotional distress during cancer chemotherapy. Cancer SO, 1020-1027, 1982. 18. Holland J. C. B. Advances in psychologic support. In Cancer: Achievement, Challenges and Prospects for the 198& Vol. 2 (Edited by Burcheud J. H. and Attgen H. F.), pp. 732-733. Grunne and Stratten, New York. 1981. 19. Penman D., Bahna G. and Holland J. C. Patients perception of giving informed consent for investigational chemotherapy. Clin. Investing 108, 1980. 20. Gilbar 0. and Kaplan De-Nour. An adjustment to illness and dropout of chemotherapy. J. Psychomatic Res. 33, l-5, 1989. 21. Aaronson N. K. and Bullinaer M. Ahmedzai. A Modular Approach to Quality of Life-Assessment Clinical Trials, 1988.
in Cancer
22. Derogatis L. R. Psychosocial adjustment to illness scale. Clinical Psychometric Research, Baltimore, 1975. 23. Derogatis L. R. Brief symptom inventory. Clinical Psychometric Research, Baltimore, 1975. 24. SAS User’s Guide: Statistics Version 5th Edn, pp. 113-137. SAS Institute Inc. Box 800, Cay, North Carolina, 1985. 25. Greer S. The psychological dimension in cancer treatment. Sco. Sci. Med. 18, 345-349, 1984. 26. Moorey S. and Greer S. Psychological Therapy for Partents with Cancer: A New Approach. Heinemann Medical Books, London.
0277-9536191 $3.00 + 0.00 Pergamon Press plc
1991
THE QUALITY OF LIFE OF CANCER PATIENTS WHO REFUSE CHEMOTHERAPY* ORA GILBAR University of Haifa and Department of Oncology, Linn Clinic, Mount Cannel, Haifa, Israel Abstract-The
study compared the quality of life of 51 cancer patients who dropped out of chemotherapy, 19 who refused treatment and a further 70 patients who had completed chemotherapy. The patients were treated in five oncological institutes in Israel. The findings of this study indicate that the quality of life of patients who refuse chemotherapy is no different from that of patients who drop out of treatment or patients who complete treatment. The findings also show that the quality of life of the patients who drop out of treatment is worse than that of patients who complete chemotherapy.
Many doctors have encountered the situation in which cancer patients refuse to receive chemotherapy after having been given an explanation of the purpose of the treatment, its side-effects and its efficacy. Each type of treatment produces various combinations of several disturbing symptoms, the most common being nausea, vomiting, hair loss, fatigue and weakness. The side-effects affect the patient’s quality of life in daily functioning at work, sexual relationships and domestic and social environments. They also create psychosocial distress [l-3]. Many studies have dealt with the quality of life of cancer patients. Some of them have focused on the aspect of the physical complaints of quality of life [4-6]. A few studies have dealt with the quality of life from the viewpoint of psychological distress, social interaction and functional status of patients receiving chemotherapy [7-l 11. However, no research has examined the question of whether the patient’s quality of life is related to his decision to refuse to receive treatment. The answer to this appears easy, as patients explain their refusal to receive treatment by their preference to maintain their quality of life even at the cost of shortening their lifespan. But if that were the case it would be reasonable to assume that the rate of patients refusing chemotherapy would be higher than the rates reported in the literature: 30% in cases of breast cancer, and 30-50% in other forms of cancer [ll-151. From the few instances in which the phenomenon of refusal to receive chemotherapy has been studied, several researchers have pointed to the mental condition of the patient influencing the refusal of or dropout from chemotherapy. Mental disorders such as psychosis, depression, and dementia can be reasons for the refusal to receive chemotherapy [16]. It is claimed that psychological distress resulting from exhaustion, weakness, pain and depression cause a stop of chemotherapy or a demand to reduce the level of therapy [17]. Patients who suffered conditional vomiting during treatment reported higher levels of emotional depression, and this influenced their *Due to circumstances beyond the Publisher’s control, this article appears in print without author corrections,
decision to reduce the volume of the treatment or to stop the therapy completely. Other researchers have indicated the level of patient’s belief in the doctor and in the treatment as factors which influence the decision to refuse or dropout from treatment. Holland [18] found that 54% of the population studied reported that their belief in the doctor was the main reason for their agreement to receive chemotherapy. A similar finding was reported by Penman, Bahn et al. [19], who found that 86% of a sample of 51 patients gave their belief in their doctor as the principal reason for their agreement to receive treatment. We studied the connection between the dropout of patients from chemotherapy and their adjustment to illness, and found that it was worse than adjustment to illness by patients who completed chemotherapy
w1.
Consequently, the aim of the present research was to examine if there was any connection between refusal to receive and drop out from chemotherapy and quality of life. The term ‘quality of life’ includes (according to Aaronson and Bullanger [21]) psychological distress (e.g. fear, depression and hostility), social interaction (e.g. quality and quantity of relationships with significant others) and functional status (e.g. vocational activity). Additional factors that have been proposed for quality of life assessments include sexuality, body image and satisfaction with medical care. The research did not relate to the physiological aspects of the quality of life of the patients who refused chemotherapy. In this pilot study, therefore, our question was whether the quality of life of patients who refused chemotherapy differed from that of those who dropped out and those who completed chemotherapy.
SUBJECTS
AND METHODS
Subjects The research comprised patients who were under treatment in five oncological institutions in Israel. Of a total of 90 patients who refused or dropped out of chemotherapy who were treated in 1983, 14 refused to be interviewed, three could not be interviewed owing to language problems and three were too
1337
1338
ORAGILBAR Table 1. Patient’s background Drop out
Age Education (yr)
Refuse
Mean
SD
N
Mean
SD
N
Mean
SD
51 51
50.86 10.12
12.96 3.19
19 19
58.31 10.79
15.06 3.81
70 70
53.91 10.69
14.45 3.25
ill. Out of 70 patients 51 dropped out of treatment and 19 refused to have chemotherapy. The third group was selected randomly from the patients who completed chemotherapy and pair-matching, controlling for sex, age (+ 5 year) time of cancer diagnosing and stage of disease, type of chemotherapy, and when treatment had taken place (within a year). The final group numbered 70 patients. Table 1 presents the background of the patients. No statistically significant differences were found between the groups. Table 2 presents the diagnosis of the patients according to two categories: Breast cancer patients and other kinds of diagnosed cancer, such as Hodgkin’s disease, stomach cancer, sarcoma, colon cancer, lymphoma, uterine cancer, ovarian cancer and face cancer. No statistical significance difference was found between the groups. Method
The patients were all interviewed at home by experienced social workers. The patients who refused chemotherapy were interviewed immediately after stating that they did not want to receive chemotherapy. Those who dropped out of chemotherapy were interviewed at home immediately after taking the decision. Those who completed the chemotherapy were interviewed no more than 2 weeks after they received the last course of the treatment. Two questionnaires were used to measure the quality of life. 1. The Psychosocial Adjustment to Physical Illness Scales (PAIS) was used to assess adjustment to illness [22]. It includes 45 items, each composed of four statements scored on a 4-point scale ranging from 0 (no problems) to 3 (many difficulties). The questionnaire covers seven dimensions, including health, environment, vocational rehabilitation, domestic environment, etc. The scale thus provides information on global adjustment (ranging from 0 to 141) as well as adjustment by specific areas. 2. The Brief Symptoms Inventory (BSI) was used to assess psychosocial distress 1231. This scale is abbreviated from the SCL-90, and correlates highly with it. It contains 53 items, each describing a feeling or thought, and is scored on a 5-point scale ranging from 0 (no such problem) to 4. The inventory is composed of 9 symptom areas such as depression, hostility, etc. Thus it provides information about global psychological distress generally as well as specifically (the sub-scales). Table 2. Patient’s diannosis Drop out
Refuse
Complete
Breast cancer Other diagnosis
26 25
10 9
36 34
72 68
Total (%)
51 36.5
19 13.6
70 50
140 100
Group
Complete
N
RESULTS
Comparison of the three groups was carried out using Scheffe’s test [24]. Table 3 presents the means and the SD on the PAIS (Psychosocial Adjustment to Physical Illness) scale of the patients who dropped out of treatment (group l), of the patients who refused chemotherapy (group 2) and of the patients who completed chemotherapy (group 3). There was no statistical difference between the patients who drop out of treatment and the patients who refuse chemotherapy although in 5 out of 7 areas the patients who drop out of treatment indicate more adjustment problems than the patients who refuse treatment. There was no statistical difference between the patients who refuse chemotherapy and patients who complete treatment although the patients who refuse chemotherapy indicated more adjustment problems than patients who complete the treatment. But a statistical difference was found between the patients who drop out of treatment and the patients who complete chemotherapy. The patients who drop out of treatment indicated more adjustment problems in five areas-Health-care Orientation, Vocational Environment, Domestic Environment, Social Environment, Psychosocial Distress-the difference between the two groups reached the level of significance. In other words, adjustment to illness among those who dropped out of treatment was worse than that among those who refused treatment and those who received the complete treatment. Table 4 presents the means and the SD on the BSI (Brief Symptoms Inventory) scale of the patients who dropped out of treatment (group l), The patients who refused chemotherapy (group 2) and the patients who completed chemotherapy (group 3). There is no statistical difference between the patients who drop out of treatment and the patients who refuse chemotherapy although in 8 out of 11 areas the patients who drop out of treatment have more psychological distress problems than the patients who refuse chemotherapy. Moreover, there is no statistical difference (except additional item) between the patients who refuse chemotherapy and the patients who complete treatment although the means of all areas indicate more psychological distress problems. But there is a statistical difference between patients who drop out of treatment and patients who complete treatment in 3 out of 1I-Gbsessive-Compulsive, Hostility, and Psychoticism and likewise on the Grand Severity Index; the differences between the two groups reach the level of statistical significance. Furthermore on the Grand Severity Index differences were found between the three groups.
Total DISCUSSION
The findings of this study indicate that the quality of life of patients who refuse chemotherapy is no
1339
‘fhe quality of life of cancer patients who refuse chemotherapy Table 3. Psychosocial adjustment to illness (PAIS)
Health care orientation Vocational environment Domestic environment Sexual relationship Extended family relation Social environment Psychological distress lP (1) (2) (3)
SD
N
Mean
SD
N
Mean
SD
4.39 4.15 3.92 5.52 1.81 5.94 5.21
19 6(l) 16 4(2) 19(3) 19 19
9.63 5.50 7.13 9.00 I .63 6.95 10.63
3.74 6.12 4.67 6.48 2.03 6.59 5.22
70 23 (I) 70 39(2) 68(3) 70 70
7.69’ 4.39. 4.919 5.92 1.15 4.17. 7.91’
3.52 4.61 4.24 5.51
Mean
::,,, :8 (2)
46 (3) 51 51
Complete
Refuse
Drop out N
Group domain
‘;::Y: 6.94. 9.03
1.37 7.41. 10.25’
1.88 4.96 4.67
< 0.05. A retired patient, students, and housewife did not answer this question. Patients refused to answer because they were embarrassed by the absence of a permanent partner. Patients with no family did not answer this question. Table 4. Psychological distress (BSI) Refuse
Drop out Group domain Somatization Obsessive compulsive lnterpenonal sensitivity Depression Anxiety Hostility Phobic anxiety Paranoid ideation Psychoticism Additional items Grand severity index (GSI)
Complete
N(1)
Mean
SD
N (2)
Mean
SD
N (2)
Mean
SD
49 49 49 49 49 49 49 49 49 49 49
1.34
0.90 0.91 0.95 0.85 1.01 0.83 0.77 0.73 0.68 0.84 30.15
17 17 17 17 17 17 17 17 17 17 17
1.23 0.89 0.83 1.25 1.06 0.89 0.58 0.75 0.76 I.500 50.64.
0.98 0.71 0.8 I 0.86 0.95 1.04 0.62 0.72 0.62 0.93 33.77
68 68 68 68 68 68 68 68 68 68 68
1.19 0.779 0.70 0.88 0.99 0.67’ 0.53 0.71 0.44. 0.81’ 37.47*
0.85 0.78 0.73 0.82 0.91 0.70 0.71 0.83 0.61 0.77 28.58
1.24’ 0.87 1.23 1.32 1.05. 0.80 0.8 I 0.86’ 1.03 45.72’
lP < 0.05.
(1) Two patients refused to complete BSI questionnaires. (2) Two patients refused to complete BSI questionnaires.
from that of patients who drop out of treatment or patients who complete treatment. The findings also show that the quality of life of the patients who drop out of treatment is worse than that of patients who complete chemotherapy. These findings are similar to those reported earlier [20]. In other words the quality of life of the patients who drop out of chemotherapy is worse than the quality of life of the patients who refuse chemotherapy (even though the differences are not significant), and the patients who complete chemotherapy. A possible explanation for the absence of differences in the quality of life of patients refusing chemotherapy on the one hand and those dropping out of/or completing treatment on the other, is that the quality of life of the former was from the outset worse than that of the latter. As a result the former refuse even to start the treatment, being afraid of any further negative influences on their quality of life. It should be noted that this research was retrospective, meaning that the quality of life was measured after the patients made their decision-to refuse treatment, to drop out, or to complete it. With such measurement it was impossible to isolate the effect caused by the psychological stress of the diagnosis and the surgery on the quality of life [25]. Another explanation for these findings is that the act of stopping treatment can influence the quality of life of those who take this step. In other words, those stopping treatment are likely to develop a strong feeling of failure in that they did not have the strength to complete the treatment. Feelings such as these are not found among those completing the treatment or among those refusing to receive treatment in the first place. If we add that in comparing those who stopped different
and those who completed treatment we found that the former are characterized by greater psychoiogical distress, we have a possible explanation for the findings of this research. From this viewpoint, for a patient who is judged likely to give up treatment it would be preferable not to start chemotherapy (from the viewpoint of quality of life). However, from a medical viewpoint, it is difficult to accept this conclusion, as dropout of chemotherapy might cause a reduction of survival. Therefore, our recommendation is to aid the patients receiving chemotherapy to preserve their quality of life. This can be achieved by learning coping skills. These skills include positive thinking, relaxation and guided imagination, setting short-term and long-term life goals, correct diet and body activity can contribute to maintaining the quality of life and, as such, perhaps prevent a decision to stop receiving treatment [26]. REFERENCES 1. Parker D. E. The employment cancer chemotherapy. Occup. Hlth Nursing 22-24, 1971. 2. Meyerowitz B. F., Spark F. C. et a/. Adjuvant
chemotherapy for breast carcinoma. Cancer 43, 1613-1618, 1979. 3. Wellisch D. K. Work Social recreation family and physical status. Cancer 58, 2290-2299, 1984. 4. Palmer B. V., Walsh G. A., McKinna, J. A. and Greening W. P. Adjuvant chemotherapy for breast cancer: side effects and quality of life. & Med. J. 281, 1594-1597, 1980. 5. Williams N. S. and Johnston D. The quality of life after rectal incision for low rectal cancer. Br. J. Surg. 70, 460-462, 1983.
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6. Priestman T. J. and Baum M. Evaluation of quality of life in patients receiving treatment for advanced breast cancer. Lancet 24, 899-900, 1976. 7. Schmale A. H., Morrow G. R., Schmit M. H., Adler M., Murawski B. J. and Gates C. Well being of cancer survivors. Psychosoma Med. 45, 1983. 8. Sugarbaker P. H., Barofsky I., Rosenberg S. A. and Gianola F. J. Quality of life assessment of patients in extremity sarcoma clinical trials. Surgery 91, 17-23, 1982. 9. Schottenfeld D. and Robbins G. F. Quality of survival among patients who have had radical mastectomy. Cancer 26, 65M55,
1970.
10. Meyerowitz B. E., Watkins J. K. and Sparks Frank C. Quality of life for breast cancer patients receiving adjuvant chemotherapy. Am. J. Nursing 1983. 11. Love R. R., Leventhal H., Easterling D. V. and Nevenz D. R. Side effects and emotional distress during cancer chemotherapy. Cancer 63, 604-612, 1989; 232-235, 1983. 12. Liberati A., Colombo F., Franceschi S., Andreani A., Confalonier C. and La Vecchia C. Quality of breast cancer care in Italian general hospitals. Lancet 31, 259-260, 1982. 13. Glass A., Vieand H. B., Fisher B., Redmond C., Lemer H. and Walter J. Acute toxity during chemotherapy for breast cancer. The National Surgical Adjuvant Breast and Borvis Proiect, (NSHBP). Cancer Treat Rep. 65, 363-376, 1981. 14. Barofskv J.. Suearbaker P. H. and Mills M. E. Comnliante and quality of life assessment. In New Directions in Patient Compliance (Edited by Cohen S. J.), pp. 59-73. Lexington Books, London, 1979. 15. Lazlo J. and Lucas V. S. Emisis as critical problem
GILBAR
in chemotherapy. New Engl. J. Med. 305, 948-949, 1981. 16. Goldberg R. J. Systematic understanding of cancer patients who refuse treatment. Psychother. Psychosonst 39, 180-189,
1988.
17. Nereny D. R., Leventhal H. and Love R. R. Factors contributing to emotional distress during cancer chemotherapy. Cancer SO, 1020-1027, 1982. 18. Holland J. C. B. Advances in psychologic support. In Cancer: Achievement, Challenges and Prospects for the 198& Vol. 2 (Edited by Burcheud J. H. and Attgen H. F.), pp. 732-733. Grunne and Stratten, New York. 1981. 19. Penman D., Bahna G. and Holland J. C. Patients perception of giving informed consent for investigational chemotherapy. Clin. Investing 108, 1980. 20. Gilbar 0. and Kaplan De-Nour. An adjustment to illness and dropout of chemotherapy. J. Psychomatic Res. 33, l-5, 1989. 21. Aaronson N. K. and Bullinaer M. Ahmedzai. A Modular Approach to Quality of Life-Assessment Clinical Trials, 1988.
in Cancer
22. Derogatis L. R. Psychosocial adjustment to illness scale. Clinical Psychometric Research, Baltimore, 1975. 23. Derogatis L. R. Brief symptom inventory. Clinical Psychometric Research, Baltimore, 1975. 24. SAS User’s Guide: Statistics Version 5th Edn, pp. 113-137. SAS Institute Inc. Box 800, Cay, North Carolina, 1985. 25. Greer S. The psychological dimension in cancer treatment. Sco. Sci. Med. 18, 345-349, 1984. 26. Moorey S. and Greer S. Psychological Therapy for Partents with Cancer: A New Approach. Heinemann Medical Books, London.
