Journalof
PsychosomaticRcsroreh.
Vol.
Printed in Great Britain.
28, No.
2, pp.
157-~62.1984.
0022-3999/84 @ 1984 PCr8Ul’Wn
S3.00+0.00 Pras Ltd.
EMOTIONAL IMPACT OF DIAGNOSIS AND EARLY TREATMENT OF LYMPHOMAS A. C. PARKER,* C. A. LUDLAM,* and R. J. McGun@
G. G. LLOYD,*
(Received 29 August 1983; accepted in revisedform 30 Octobe-r 1983) Abstract-Psychiatric morbidity, relevant symptoms and satisfaction with communication were assessed in patients suffering from malignant lymphoma. Before treatment started 15 of 40 patients had clinically significant psychiatric morbidity. Treatment, in its early stages, was not associated with a significant change in mean psychiatric morbidity scores but there was a decrease in ratings of concern about illness and an increase in ratings of nausea. Eleven of 31 patients seen for a second interview reported dissatisfaction with some aspect of communication with the medical staff. The findings suggest that emotional distress can be contained with a policy of frank communication; nevertheless dissatisfaction is common, being associated with initial less concern, good general health and neurotic personality traits. Personality assessment should be incorporated in future studies of doctor-patient communication.
INTRODUCTION MOST PATIENTS with
malignant disease wish to know the nature and severity of their condition [I]. Doctors are becoming less inhibited in their discussions with patients, and, ideally, are flexible with regard to the amount of information they convey [2]. Despite this enlightened approach popular attitudes towards malignancies set them apart from other illnesses as objects of fear [3,4]. High rates of psychiatric morbidity have been reported in patients with malignant disease and several factors, including the specific nature of the tumour and the treatment required, have been claimed to influence the psychological response [5]. Although most studies have been concerned with patients requiring surgery, the results of which are often disfiguring [6-S], other methods of treatment, radiotherapy and chemotherapy, are also associated with emotional distress [9, lo]. Yet few reported studies have examined patients with tumours not primarily treated by surgical excision. Furthermore, from the available literature it is often difficult to distinguish the emotional impact of treatment from that due to the disease itself. We report here a group of patients suffering from malignant lymphoma who were treated with chemotherapy, radiotherapy or a combination of both. Surgery was undertaken only for biopsy, or, in some patients with Hodgkin’s disease, a staging laparotomy. The aims of the study were: (1) to determine the prevalence of psychiatric morbidity following communication of the diagnosis to the patient. (2) To determine the change in psychiatric morbidity and other relevant symptoms following treatment. (3) To assess the patient’s overall satisfaction with communication by the staff and to identify factors associated with this. *Royal Infirmary, Edinburgh. TDepartment of Psychiatry, University of Edinburgh. Address for correspondence: G. G. Lloyd, Department of Psychological Medicine, Royal Infirmary, Edinburgh. 157
158
G. G. LLOYD,A. C.
PARKER, C. A. LUDLAM
and R. J. McGunm
SUBJECTS AND METHODS We studied a series of patients diagnosed as having either Hodgkin’s or non-Hodgkin’s lymphoma. Forty-four patients were referred during an 18 months period but 4 had already started treatment before they could be included in the study; the results therefore pertain to 40 cases. The diagnosis was made following biopsy and histological examination. Staging of the tumour was carried out by clinical assessment and suitable investigation by radiological and surgical methods to follow the Ann Arbor Classification [ll]. All patients were under the care of one of two physicians whose policy was to inform patients frankly about diagnosis and treatment, bearing in mind that different patients would wish to know about their illness in varying degrees of detail. Each patient also received an explanatory leaflet prepared by the Leukaemia Research Fund. Psychiatric assessment was undertaken once the staging procedures had been completed but before treatment had started. This occurred approximately 2 weeks after the diagnosis had been established. The personal and medical history was recorded in a standardised manner and psychiatric examination performed using the Standardised Psychiatric Interview [12]. This semi-structured interview was designed to assess such minor degrees of psychiatric morbidity as might be found in the general population and has also been used in groups of medical patients. A weighted score is derived from symptoms present during the previous week and abnormalities manifest at interview. Patients then completed the Eysenck Personality Questionnaire (EPQ) [13] and finally a series of visual analogue scales was completed to assess certain symptoms and attitudes associated with the illness; pain, anorexia, nausea, fatigue, general health. concern and hopelessness. Visual analogue scales have been shown to provide a reliable method for assessing feelings [14, IS] and can be specially constructed according to the requirements of a particular study. Patients were treated according to the nature and extent of their tumour, either with chemotherapy, radio-therapy or a combination of both. Between 4 and 6 months after the initial assessment a second interview was carried out. The psychiatric examination and visual analogue scales were repeated and a short questionnaire designed to assess satisfaction with communication was completed. Patients were asked whether they had been adequately informed about their illness and their treatment, and whether they had had sufficient time to ask questions of their doctor. A negative reply to any of these three items was deemed to indicate dissatisfaction. RESULTS
Demographic characteristics, type of tumour and treatment The 40 patients, of whom 25 were men, ranged in age from 19 to 77 with a mean of 43.6 yr (SD & 18.5). Hodgkin’s disease was diagnosed in 18 cases and nonHodgkin’s disease in 22; the demographic characteristics, staging and treatment of the two groups are shown in Table I. Patients with non-Hodgkin’s disease were older than those with Hodgkin’s but not significantly so (F ratio = 3.62; p = 0.065). However they were more likely to be married (x2 = 9.96; df = 1; p
Emotional impact of diagnosis TABLEI.-DEM~G~AFWC
159
CWRACTERISTICS,STAGINGAND TREATMENT
Hodgkins (n= 18)
Non-Hodgkins (n = 22)
Age Mean SD Sex Male
Female Marital Status Married Unmarried
37.61 19.91
48.45 16.16
9 9
16 6
7 11
20 2
3 8 7
12 5 5
Staging 1A B 2A B 3A B 4A B Treatment Chemotherapy Radiotherapy Chemotherapy + radiotherapy
LO-
.
.
30.
L i > c
0 2 P u t P I Y 2
20-
. . . . . . . . . . . . . . . . . . .
1086L2o-
..,.. . . . . . . . . . . . ..FIG. 1.
160
G. G. LLOYD, A. C. PARKER, C. A. LULILAMand R. J. MCGUIRE
tumour, its staging or the treatment received; nor was there any significant correlation with age. However the mean score for women (14.47 + 10.17) was higher than for men (8.00 + 6.92) (F= 5.74; p <0.05) and overall there was a significant correlation between psychiatric morbidity and the personality dimension of neuroticism (r=0.49; p
Psychiatric morbidity Pain Anorexia Nausea Fatigue General health Concern Hopelessness
1st Interview Mean SD
2nd Interview Mean SD
10.35 12.87 22.93 7.55 31.19 66.68 59.16 21.52
8.61 11.68 25.84 17.93 37.87 67.32 48.84 14.19
9.55 14.78 22.67 9.59 25.55 20.14 27.79 23.45
9.81 12.78 24.20 18.91 23.69 22.89 30.53 16.09
Significance
of change
t= 1.58; NS
t = 0.42; NS t=0.81; NS t=2.71;p<0.01 t=1.29;NS t=0.14; NS t=2.35;p<0.05 t=1.49;NS
The data obtained at the first interview were examined in an attempt to distinguish those who died from the survivors. The patients who died were found to have obtained significantly higher ratings for “anorexia” (p < 0.001) and “fatigue” @ < 0.05) but were not distinguished by the Ann Arbor staging. Satisfaction with information Eleven patients reported dissatisfaction with some aspect of communication from the staff. In 8 dissatisfaction was related to inadequate information about the illness, in 6 to inadequate information about the treatment and in 5 to insufficient time to ask more detailed questions of the staff. All patients approved of having been told the diagnosis and those who complained of inadequate information wished that this had been more explicit.
Emotional impact of diagnosis
161
To identify patients likely to be dissatisfied these 11 were compared with the 20 who expressed satisfaction. Differences were found on the visual analogue scales and personality questionnaire as shown in Table III. Patients who later expressed dissatisfaction initially obtained lower scores for “concern” and higher scores for “general health” and neuroticism. There were no differences with regard to age, sex, type of tumour, treatment received or psychiatric morbidity scores. TABLEIII.-COMPARISONOFVISUAL ANALOGUE SCALES ANDE.P.Q. SCORES IN RELATION TOSATISFACTION WITHCOMMUNICATION Satisfied (n = 20) Mean SD
Dissatisfied (n=ll) Mean SD
Visual analogue: Pain Anorexia Nausea Fatigue General health Concern Hopelessness
14.1 24.2 9.6 29.9 61 .O 67.0 24.3
15.1 21.3 10.2 26.1 18.4 24.9 24.8
10.5 20.6 3.8 33.5 11.0 44.9 16.4
E.P.Q.: Neuroticism Extraversion Psychoticism Lie
7.2 11.6 2.6 10.1
5.5 6.0 1.8 5.2
12.2 11.8 4.8 10.2
F ratio
P
14.6 26.0 7.4 25.6 19.7 28.1 20.8
0.4 0.2 2.7 0.1 5.1 5.1 0.8
NS NS NS NS < 0.05 < 0.05 NS
4.9 5.6 6.9 3.3
6.2 0.1 1.9 0.0
< 0.02 NS NS NS
DISCUSSION
The period following diagnosis is a time of considerable emotional distress for patients with lymphomas. Depression and anxiety were the predominant symptoms in this group of patients, the content of the symptoms being concerned with the implications of the tumour on future health and life expectancy. Fifteen of the 40 patients obtained scores in the morbid range on psychiatric interview, a similar proportion to that found in patients after an acute myocardial infarction [16]. In the majority the psychological symptoms appeared to have been precipitated by knowledge of the illness and reflected a non-specific emotional response to physical ill-health. For most patients symptoms did not worsen following early treatment; only 2 who obtained scores in the morbid range at the second interview had not been similarly assessed initially. It could be argued that patients might have improved emotionally if information about the illness had been less frank. However, in this group there was unanimous approval of being told the diagnosis and we believe our findings support the claim that most of the emotional problems can be contained if an open approach to communication is adopted [lo]. Additional counselling might have prevented or alleviated the distress and there is clearly a need to evaluate alternative methods of psychological support in patients with this type of illness. Despite a policy of frank communication one third of our patients expressed dissatisfaction with some aspect of the information received, wishing to know more about the illness and treatment. We have not attempted to assess the quantity of information recalled but have relied on a global assessment of satisfaction. The
162
G. G. LLOYD,A. C. PAIIKER,C. A. LULXAMand R. J. McGuta~
observations that dissatisfied patients initially perceived better general health and were less than concerned about their illness suggest they were ill-prepared and needed more thorough information. The higher neuroticism scores of the dissatisfied group might merely reflect a general tendency of neurotic patients to complain; on the other hand they could be due either to a poorer grasp of information by those with neurotic traits or to doctors being less frank with this group of patients. Ley [l] has emphasised that dissatisfaction will not necessarily be averted by frank communication. Our observations indicate that some of the reasons for dissatisfaction are related to the patient’s personality and assessment of personality should be incorporated in future studies of doctor-patient communication. REFERENCES
1. LEY P. Psychological studies of doctor-patient communication. In Contributions to Medico1 Psychology (Edited by RACHMAN S), Vol. I, pp. 9-42. Oxford: Pergamon, 1977. 2. BREWIN,TB. The cancer patient: communication and morals. BrMedJ 1977; ii: 1623-1627. 3. SENESCURA. The development of emotional complications in patients with cancer. J Chron Dis 1963; 16: 813-832. 4. HOLLANDJ. Psychologic aspects of cancer. In Cuncer Medicine (Edited by HOLLANDJF and FREIE), pp. 991-1021. Philadelphia: Lea and Febiger, 1973. 5. LLOYDGG. Psychological stress and coping mechanisms in patients with cancer. In Mind and Cancer Prognosis (Edited by STOLLB), pp. 47-59. Chichester: Wiley, 1979. 6. DE~LP~ HB, PLANTJA, GRIF~N M. Aftermath of surgery for anorectal cancer. Br Med J 1971; iii: 413-418. I. MORRIS T, GREETHS, WHITE P. Psychological and social adjustment to mastectomy: a two year follow-up study. Cancer 1977; 40: 2381-2387. DJ, KUCHEMANCS, CRABTREERJ; CORNELLCE. Psychiatric 8. MAGUIREGP, LEE EG, BEVINGTON problems in the first year after mastectomy. Br Med J 1978; i: 963-965. DS, GRIF~N M. Psychiatric aspects of radiotherapy. Am J Psychiut 1978; 9. FORESTERBM, KORNFELD 135: 960-963. 10. BRINKLEY D. Emotional distress during cancer chemotherapy. Er Med J 1983; 286: 663-664. 11. Report of the Committee on Hodgkin’s Disease Classification. Cancer Res 1971; 31: 1860. 12. GOLDBERG DP, CARPERB, EASTWOOD MR, KEDWARDHB, SHEPHERDM. A standardised interview for use in community surveys. Br J Prev Sot Med 1970; 24: 18-23. 13. EYSENCKHJ, EYSENCKSBG. Munuul of the Eysenck Person&y Questionnaire. London: Hodder and Stoughton, 1975. 14. AITKEN RCB. Measurements of feelings using visual analogue scales. Proc R Sot Med 1969; 62: 989-993. 15. BONDAJ, LADERMH. The use of analogue scales in rating subjective feelings. Br J Med Psycho1 1974; 47: 211-218. 16. LLOYDGG. Psychiatric morbidity in men after a first acute myocardial infarction. M.D. Thesis, University of Cambridge, 1982.