Patient Education and Counseling 45 (2001) 173±179
Effects of information supply on satisfaction with information and quality of life in cancer patients receiving curative radiation therapy Caroline HaÈggmarka,*, Lena Bohmanb, Kate Ilmoni-Brandtb, Ingemar NaÈslundb, Per-Olow SjoÈdeÂnc, Bo Nilssond a
b
Department of Oncology, Karolinska Hospital, 17176 Stockholm, Sweden Division of Radiation Therapy, Department of Oncology, Karolinska Hospital, 17176 Stockholm, Sweden c Centre for Caring Sciences, Uppsala University, Uppsala, Sweden d Epidemiological Unit, Institution of Oncology, Karolinska Institute, Stockholm, Sweden Received 15 July 2000; received in revised form 24 October 2000; accepted 10 December 2000
Abstract In order to test the ef®cacy of various information inputs, 210 consecutive cancer patients were randomized to one of three information conditions before the start of curative radiation treatment: (1) standard information plus group and repeated individual information (n 70), (2) standard information plus brochure (n 70), and (3) standard information only (n 70). Patients completed questions regarding satisfaction with information, anxiety, depression, subjective distress and quality of life at inclusion, and 1 h before the start of the radiation therapy treatment (approximately 4 weeks later). Patients receiving standard information plus group and repeated individual information were signi®cantly more satis®ed with the information than were patients in the remaining two groups. There were no differences with respect to any of the other outcome measures. This study has shown that the nurses group and individual information was of signi®cant importance in preparing the patients for the procedure of receiving radiation therapy. # 2001 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Radiation therapy; Information; Quality of life; Anxiety; Depression; Distress
1. Introduction Several studies have shown that patients undergoing radiation therapy have multiple fears, anxieties and stress related to the therapy [1±3]. In interviews with 30 radio-oncological in-patients, Lamszus and Verres [4] found that the irradiation session itself, the waiting time before treatment and the relationships with fellow patients were potentially stressful. Fears arising during the treatment were reported to include thoughts about the size, movement and possible fall of the machinery, incorrect radiation doses, lying in uncomfortable positions, and being left alone during treatment. More than half of all patients reported anxiety during their ®rst irradiation, which usually decreased during subsequent sessions. Peck and Boland [5] studied what cancer patients were told when radiation therapy was prescribed. They found that patients believed that requiring radiation was a very bad news and few of them expected it to be curative. The most feared side-effects were burns (72%), scars (54%) and pain * Corresponding author. E-mail address:
[email protected] (C. HaÈggmark).
(54%). Interviews after treatment completion revealed an incidence of depression and anxiety greater than that in pretreatment interviews, suggesting that radiation treatment is stressful in itself. The authors recommended repeated information to patients preparing them for what to expect during treatment in order to resolve their anxiety. Although the importance of information has been stressed, several studies have shown that a large percent of patients still have insuf®cient knowledge about their diagnosis and their prescribed treatment. Cassileth et al. [6] explored information-giving and -seeking among both experienced and recently diagnosed cancer patients who were receiving or about to receive radiation therapy. They found that relatively few recently diagnosed patients felt well informed about the procedure, side-effects and ``what radiation therapy can do for my illness''. Although approximately three quarters of the experienced patients felt well informed, 67% of those, and 72% of the inexperienced patients wanted to know more about radiation therapy. Only 2% did not want information about their diagnosis, side-effects or treatment. Hinds et al. [7] carried out a study with the purpose to determine patients' perception of the function of information.
0738-3991/01/$ ± see front matter # 2001 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 7 3 8 - 3 9 9 1 ( 0 1 ) 0 0 1 1 6 - 1
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A total of 83 patients with cancer were interviewed before and/or after a full course of radiotherapy. A total of 36 patients were interviewed at both times. The results indicate that active participation was the most frequently cited function, followed by anxiety reduction and preparation. Few studies have been carried out to evaluate the effects of information interventions for cancer patients undergoing radiotherapy. Ream and Richardson [8] reviewed the literature and found only four studies which met the criterion of comparing one or more experimental conditions with at least one control group. All of the interventions incorporated information about the likely side-effects of treatment and the techniques that could be used to alleviate symptoms. The outcomes of these studies often concern aspects such as the initiation of self-care strategies and their effectiveness. Although the studies report positive effects of information in that more self-care behaviours were initiated, and lower anxiety scores and less disruption of daily activities were demonstrated, the authors [8] point out the dif®culties to ascertain the validity of the results. The papers report little information on factors determining the choice of sample size, and the demographic, medical and treatment variables within the control and experimental groups. It is well documented that cancer patients want to know more about their treatment. Against this background it is of interest to study if increased information activities is the determining factor for improving the patients quality of life and satisfaction with information. Since less economical resources are provided to hospital care it is also of importance to evaluate the bene®ts of increased information activities before implementing these into the clinical care. 1.1. Purpose of the study In order to test the ef®cacy of different information inputs, a randomized study was performed at Radiumhemmet, Karolinska hospital, Stockholm from October 1993 to January 1995. A consecutive series of cancer patients receiving curative radiotherapy were randomized to one of three different information inputs before the start of the treatment: (1) standard information plus group and repeated individual information (SIGI), (2) standard information plus brochure (SIB), and standard information (SI). The purpose was to investigate the effects of standard information plus group and repeated individual information (SIGI) compared with standard information plus brochure (SIB) and standard information (SI) on satisfaction with information, anxiety, depression, subjective distress and quality of life. 2. Materials and methods 2.1. Patients A total of 281 consecutive patients who were diagnosed as having breast-, bladder- or prostate cancer and who were to
receive curative radiation therapy for the ®rst time were recruited consecutively from four hospitals in the Stockholm area. A further inclusion criterion was a good command of spoken and written Swedish. Power analysis was carried out to determine the required sample size. In order for a 20% difference to be detected, the required number of patients was calculated to be slightly more than 200 (70 in each of three groups). A total of 231 patients (82%) participated. Of the 50 non-participants, 19 were unwilling to take part, 11 did not have the mental stamina, 2 did not want more information, and 15 gave other reasons such as a long travel distance to the hospital, about to go away on holiday, or able to seek information for themselves. A further 21 patients (10%) were excluded due to changes in their medical treatment. These changes would have interfered with the procedure of giving information to the patients. Thus, data from 210 patients were used for the present report. Table 1 describes age, sex, diagnosis, family situation, number of children, education, and the duration of waiting time between the day the patient was noti®ed that he/she was to receive radiation therapy and start of the treatment. There were no signi®cant differences between the randomized groups in any of these characteristics. 2.2. Procedure The study was approved by the Research Ethics Committee at the Karolinska Hospital. The patients were informed about the study in connection to visiting an oncologist, who informed them that radiation therapy was considered. After about 2 days, they were contacted by telephone in order to ®nd out if they were willing to participate. In case of acceptance, the patient was randomized to one of the three groups during the telephone call. The patients were given written and oral information explaining the purpose of the study. Con®dentiality was guaranteed and it was stressed that participation was voluntary. 2.3. Information inputs 2.3.1. Standard information plus group and individual information (SIGI) The group information, which was given by a nurse, was diagnosis-speci®c and was given on one occasion about a week after the decision about radiation therapy. It included information about preparation for radiation therapy, the radiation treatment, possible side-effects and some practical advice (expenses, taxi-rides and sick-listing). The meeting included a visit to a treatment facility. Finally, a brief summary of the information was given. The oral information was also distributed in written form at the end of the meeting. The information meeting lasted for about an hour and the number of patients on each occasion was limited to eight. Relatives were also invited to share the information in order to enable them to play a more active role during the treatment period. In addition, the patients were informed
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Table 1 Characteristics of patients in groups SIa, SIBb and SIGIc (n and %) SI (n 69)
SIB (n 72)
SIGI (n 69)
P
Age Mean (S.D.)
57 (11.51)
58 (11.08)
56 (12.40)
Gender Woman Man
60 (87) 9 (13)
63 (88) 9 (12)
64 (93) 5 (7)
n.s.d
Diagnoses Breast cancer Breast cancer lgll Urinary and bladder
33 (48) 27 (39) 9 (13)
44 (61) 20 (28) 8 (11)
35 (51) 28 (41) 6 (9)
n.s.
Family situation Living with spouse and children Living alone
55 (80) 14 (20)
53 (77) 16 (23)
54 (78) 15 (22)
n.s.
Education Less than university level University level Other
37 (54) 24 (35) 8 (11)
35 (51) 19 (26) 15 (23)
34 (49) 22 (32) 13 (19)
n.s.
The length of the waiting period in days Mean Range
49 16±83
52 9±118
52 25±88
n.s.
a
Standard information (SI). Standard information plus brochure (SIB). c Standard information plus group and individual information (SIGI). d n.s.: non-significant. b
that it was possible for them to get further individual information at a special group meeting with the nurse giving group information or by telephone. They were also invited to call if problems occurred. In a week 6 h were set aside for telephone conversations. In case of need, contacts were arranged with a physician or a medical social worker. A total of 57 (81%) of the 70 patients in the SIGI took part in the group information meetings, seven patients (10%) chose not to take part and six patients (9%) chose to receive the information by telephone alone. A total of 65 of the 70 patients (93%) made use of the telephone conversations. Their questions concerned the start of the treatment (n 43), the treatment (n 13), practical questions concerning the treatment (n 28), and anxiety related to the treatment (n 12). 2.3.2. Standard information plus brochure (SIB) The patients received standard information and a brochure about the preparation and performance of treatment, sideeffects and some practical advice. The brochure was mailed to the patients together with the ®rst questionnaire (Assessment 1), within 2 days after the standard information. 2.3.3. Standard information (SI) The SI given to the patients at the four hospitals did not differ. The hospital carrying out this study (Radiumhemmet) is responsible for co-ordinating a conference activity with the four hospitals every week. At this conference one physician from Radiumhemmet gave standardized information to all
patients who are going to receive radiation therapy. This information was given before the start of preparation for radiation therapy, when the patient was told about the proposed treatment, and included the duration of treatment, how often the treatment was to be given and some information about how it is done. The patient also received an invitation to take part once in an 1 h group information meeting, which was offered once a week in the radiotherapy department. This meeting was conducted by a nurse and included information on preparation for radiation therapy, the treatment, side-effects and practical advice, such as expenses, taxi rides and sick-listing. The information given was not differentiated for different diagnosis. A total of 16% of those invited attended a group meeting. 2.4. Instruments A self-assessment questionnaire was developed speci®cally for this study in order to evaluate satisfaction with the information about radiation therapy. Visual analogue scales (VAS) were used to allow the patients to mark on a 0± 100 mm line, their satisfaction with information, ranging from ``not at all satis®ed'' to ``completely satis®ed''. There were seven questions concerning satisfaction with the information about: ``why receiving radiation therapy'', ``how radiation therapy is carried out'', ``the radiation therapy, tailor-made for you'', ``preparation before radiation therapy'', ``implications of the visit at the simulator unit'', ``possible side-effects of the radiation therapy'', and ``the
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total information given concerning the coming radiation therapy''. The hospital anxiety and depression (HAD) scale is a selfassessment scale [9] used to detect mild degrees of anxiety and depression. It consists of 14 items, seven measuring anxiety and seven depression. The time-frame is the last week. The responses to all items are scored from 0 to 3 (not at all, most of the time). Higher scores mean more anxiety and depression. Maximum scores for anxiety and depression are 21. The impact of event scale (IES) is a self-report instrument assessing the essential characteristics of subjective distress. The questionnaire consists of 15 items, measuring avoidance (eight items concerned with active avoidance of certain ideas, feelings or situations, in this study related to radiation therapy), and intrusion (seven items concerned with experienced ideas, images, feelings or bad dreams related to radiation therapy). The patients were instructed to describe how frequently these were true during the past week. Each item has four categories. The responses were scored 0, 1, 3, 5 (never, seldom, sometimes, often) [10]. Higher scores mean more avoidance and intrusion. The cancer inventory of problem situations (CIPS II) is a self-assessment scale [11,12] concerned with problems related to cancer patients' quality of life. In the present study, 17 items were selected from CIPS II. They were considered to be of particular relevance to radiation therapy and were combined into seven subscales measuring problems indoors (one item, max score 4), psychological distress (four, max 16), worry (two, max 8), work (one, max 4), communication (®ve, max 20), anxiety (two, max 8), and the experience of control (two, max 8). The patients were instructed to complete the scale in accordance with the extent to which the items were applicable during the last month, using a 0±5 scale ranging from ``not at all'' to ``very much''. Higher scores indicate more problems. Assessments were performed on two separate occasions except for ``satisfaction with information'' which was assessed only at the second assessment. The reason for assessing ``satisfaction with information'' only at the second assessment was that the SIGI information was not offered to the patients at the time for the ®rst assessment. The ®rst assessment was made when the patient had accepted to participate in the study and the randomization had been carried out (Assessment 1). The second was made 1 h before the start of the radiation therapy treatment (Assessment 2). 2.5. Statistical methods Category data were evaluated by the Chi-square test for comparing differences between groups. Fisher's F-test was used to test differences between the groups with regard to age and the duration of waiting period in days. Analysis of variance (Anova) (repeated measures) was performed to test group differences, differences between assessments and group by assessment interactions concerning anxiety,
depression, subjective distress and quality of life. Analysis of variance (Anova) was used to test group differences regarding satisfaction with information. Chi-square test was employed for evaluating group differences concerning the proportion of patients scoring above the cut-off point for possible clinical cases [8] on the anxiety and depression subscales [9]. Pearson's product moment correlation coef®cient was used to study relationships between satisfaction with information and (1) HAD and (2) IES variables. 3. Results 3.1. Satisfaction with information Patients receiving SIGI information were, except for one question (satisfaction with ``why receiving radiation therapy''), signi®cantly more satis®ed with all aspects of the information about radiation therapy than patients receiving SI or SIB information who did not differ from each other (Table 2). Table 2 Mean values for satisfaction with information at the second assessment in groups SIa, SIBb and SIGIc Variablesd
n
Mean (S.D.)
P
Why receiving radiation therapy SI 60 SIB 67 SIGI 58
8.35 (2.30) 8.55 (2.35) 8.91 (2.25)
n.s
How radiation therapy is carried out SI 57 SIB 60 SIGI 58
7.10 (3.37) 6.98 (3.61) 8.76 (2.27)
0.003
Preparation before radiation therapy SI 60 SIB 62 SIGI 55
6.45 (3.72) 7.13 (3.43) 8.75 (2.12)
0.001
Possible side-effects SI SIB SIGI
6.65 (3.55) 6.93 (3.32) 8.58 (2.31)
0.002
60 60 57
The total information given about the coming radiation therapy SI 59 6.43 (3.30) SIB 62 6.98 (3.19) SIGI 58 8.75 (1.94)
0.000
The the radiation therapy ± tailor-made for you SI 55 6.92 (3.52) SIB 57 6.75 (3.56) SIGI 58 8.43 (2.46)
0.01
The visit at the simulator SI 60 SIB 61 SIGI 55
0.05
a
6.48 (3.57) 6.21 (4.07) 7.94 (3.25)
Standard information (SI). Standard information plus brochure (SIB). c Standard information plus group and individual information (SIGI). d Higher scores indicate higher satisfaction. b
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Table 3 Mean values for anxiety, depression, intrusion and avoidance at two assessments in groups SIa, SIBb and SIGIc
Table 4 Mean values for the quality of life variables at two assessments in groups SIa, SIBb and SIGIc
Variabled (max score)
Variabled (max score)
n
Assessment 1
n
Assessment 2
Anxious [8] SI SIB SIGI
69 70 67
2.88 2.89 2.90
69 71 68
2.01 2.34 2.15
Psychological distress [16] SI 69 SIB 71 SIGI 67
4.52 4.90 4.63
69 72 68
4.81 5.06 4.75
Communication [20] SI SIB SIGI
68 69 64
2.96 3.19 2.84
69 69 66
2.81 4.01 2.02
Indoors [4] SI SIB SIGI
69 71 66
1.04 1.17 0.97
69 72 69
0.96 1.15 1.07
Work [4] SI SIB SIGI
69 70 64
1.93 2.27 1.78
66 69 66
1.80 1.61 1.42
Worry [8] SI SIB SIGI
69 71 67
2.99 2.92 3.00
68 72 68
2.71 3.00 2.15
Control [8] SI SIB SIGI
68 71 65
2.96 2.58 3.14
69 70 67
2.29 2.57 2.69
HAD Anxiety [21] SI SIB SIGI Depression [21] SI SIB SIGI IES Intrusion [35] SI SIB SIGI Avoidance [40] SI SIB SIGI
n
Assessment 1
n
Assessment 2
68 70 69
5.34 5.46 5.72
68 70 68
5.35 6.07 5.46
68 68 69
3.27 3.26 3.30
69 69 68
2.99 2.99 3.06
64 68 65
8.86 9.22 10.02
65 68 66
11.97 11.51 11.27
63 66 64
10.38 10.32 9.23
63 67 63
10.83 10.97 10.94
a
Standard information (SI). Standard information plus brochure (SIB). c Standard information plus group and individual information (SIGI). d Higher scores indicate more problems. b
3.2. Anxiety and depression There were no signi®cant differences between the groups for anxiety (Table 3). The mean scores for depression decreased from the ®rst to the second assessment in all groups but there were no signi®cant differences. There were no group by assessments interactions. Zigmond and Snaith [9] recommended a ``cut-off point'' at score 8 for identifying potentially clinical cases regarding anxiety and depression. Anxiety: a total of 19 patients (28%) in the SI group and 21 (30%) in the SIB group scored 8 or higher at Assessment 1and 2. In the SIGI group, 21 (30%) and 18 (26%) scored 8 or higher at Assessment 1 and 2, respectively. Depression: a total of eight patients (12%) in the SI group, eight (12%) in the SIB group and 11 (16%) in the SIGI group scored 8 or higher at Assessment 1. At Assessment 2, six patients (9%) in the SI group, 11 (16%) in the SIB group, and six patients (9%) in the SIGI group scored 8 or higher. There were no statistical signi®cant differences between the groups in these respects. 3.3. Avoidance and intrusion Although the mean scores for avoidance increased from the ®rst to the second assessment in Group SIGI, there were no signi®cant between-group differences. There were no signi®cant differences between the groups with regard to intrusion and there were no Group by Assessments interactions (Table 3).
a
Standard information (SI). Standard information plus brochure (SIB). c Standard information plus group and individual information (SIGI). d Higher scores indicate more satisfaction. b
3.4. Cancer inventory of problem situations The majority of the mean scores for the inventory of the cancer problem situations (anxiety, communication, work, control) decreased from the ®rst to the second assessment in all groups, but there were no group differences. The mean scores for psychological distress increased in all groups from the ®rst to the second assessment but there were no group differences (Table 4). 3.5. Analysis of relationships between variables There were no statistically signi®cant correlations between satisfaction with information and anxiety or depression. However, avoidance was negatively associated with satisfaction with information, concerning preparation before radiation therapy (r 0:19; P < 0:05), possible sideeffects (r 0:18; P < 0:05), the total information given about the coming radiation therapy (r 0:23; P < 0:01), the radiation therapy designed especially for you (r 0:17;
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P < 0:05) and the visit at the simulator (r P < 0:01).
0:20;
4. Discussion The purpose was to investigate the effects of standard information plus group and repeated individual information (SIGI) compared with standard information plus brochure (SIB) and standard information (SI) on satisfaction with information, anxiety, depression, subjective distress and quality of life. 4.1. Satisfaction with information The patients in the SIGI group evidenced a signi®cantly higher satisfaction with the information about radiotherapy than did patients in the SI and SIB groups. The SIGI condition also yielded a strong interest to participate in the intervention programme. A majority of the SIGI patients (81%) took part in the specially designed group information meetings. In addition, 65 out of the 70 patients in this group (93%) made use of further individual repeated information about the start of the treatment, the treatment, practical questions concerning the treatment and anxiety related to the treatment. This should be contrasted with the 16% of patients receiving standard information who attended a group meeting once. 4.2. Quality of life There were no signi®cant differences between the groups with respect to anxiety. In addition, there was no relationship between level of anxiety and satisfaction with information. Several theories have been put forward to explain why information may relieve anxiety in hospitalized patients. While some studies have failed to obtain signi®cant effects of preparatory information on anxiety, other studies have shown a signi®cant impact [13±17]. There are several possible explanations of the absence of anxiety differences between the groups. Results from other studies suggest that patient anxiety is relieved more reliably by the use of re-framing and empowering interventions than by the presentation of neutral information with no direct attempt to in¯uence patients' inferences [18]. Another explanation deals with the categories of information necessary to prepare a patient for a threatening event, and the most effective method of presenting such information. Poroch [13] tested the effectiveness of preparatory patient education in reducing anxiety and improving satisfaction during the course of treatment. The experimental group received two structured teaching interventions incorporating sensory and procedural information designed to familiarize the patient with the forthcoming experience. The control group received the standard information that was current in the Radiation
Therapy Department. At the second preparatory patient education session the patients were taught individually about the treatment plan, side effects, and self-care. The results indicated that the experimental group was signi®cantly less anxious and signi®cantly more satis®ed during radiation therapy than was the control group and the effects were maintained throughout the treatment period of up to 7 weeks. The absence of between-group differences with regard to depression is consistent with earlier ®ndings showing increased satisfaction with information but no reduction in depression [15,16]. Yet, the low mean level of depression already at inclusion would make further reduction unlikely. Ley [19] reported that there may be a relationship between satisfaction with information and mood. No relationship was found between satisfaction and depression in the present study. Furthermore, there were no signi®cant differences between the groups with respect to subjective distress (avoidance and intrusion). Thus, the interventions were without effect. However, avoidance was negatively correlated with satisfaction concerning information about preparation before radiation therapy, possible side-effects, the total information given about the coming radiation therapy, the radiation therapy tailor-made for you and the visit at the simulator. It is possible that patients with high avoidance would have preferred less information, why they experienced lower satisfaction. Such a possibility agrees well with ®ndings showing that information avoiders experience less anxiety when given little pre-catheretization information [20] and that an information avoidant coping style in¯uences satisfaction with information [21]. Another explanation of the lack of signi®cant group differences may be that the information was given in a neutral mode with no empowering interventions directed to in¯uence patients. Attempts to empower patients were evaluated in a study carried out by WengstroÈm et al. [22]. The purpose was to evaluate the effects of a nursing intervention on subjective distress, side-effects and quality of life of breast cancer patients receiving curative radiation therapy. The intervention, providing an individualized response to patient needs, was structured according to Orem's model for self-care, and consisted of ®ve 30 min sessions once a week. The goal was to liberate the patient from the dependency of the nurse. The intervention was shown to have a positive effect in minimizing subjective distress. No signi®cant effect was found for side effects or quality of life. Thus, a higher degree of individualization may be needed for ameliorating distress. In our evaluation of the SIGI programme the intention to treat principle has been used. This means that patients who were recruited to this programme but not participated in the group information and telephone conversation have nevertheless been included in the SIGI group. We have followed this principle in order to avoid ``selection effects'', i.e. false positive effects of the programme.
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4.3. Clinical implications This study has shown that the nurses group and individual information was of signi®cant importance in preparing the patients for the procedure of receiving radiation therapy. Although the patients in the SIGI group were more satis®ed with the information it is suggested that the programme will not be implemented in the clinical care since the bene®ts are not in proportion to the increased expenses. Acknowledgements This research was made possible by grants from the Swedish Cancer Society and Gustav V Jubilee Fund. References [1] Andersen BL, Karlsson JA, Andersson B, Tewfik HH. Anxiety and cancer treatment: response to stressful radiotherapy. Health Psychol 1984;3:535±51. [2] Lamszus K, Verres R, Hubener. How do patients experience radiotherapy? Onkol 1994;3:162±8. [3] Frith B. Giving information to radiotherapy patients. Nurs Stand 1991;34:33±5. [4] Lamszus K, Verres R. Social support of radiotheray patients in emotional stress and crisis situations. Onkol 1995;7:408±14. [5] Peck A, Boland J. Emotional reactions to radiation treatment. Cancer 1977;40:180±4. [6] Cassileth BR, Volckmar BA, et al. The effect of experience on radiation therapy patients desire for information. Inst J Radiat Oncol Biol Phys 1980;493±6. [7] Hinds C, Streater A, Mood D. Functions and preferred methods of receiving information related to radiotheray. Cancer Nurs 1995; 18:374±84. [8] Ream E, Richardson A. The role of information in patients' adaption to chemotherapy and radiotherapy: a review of the literature. Eur J Cancer 1996;5:132.
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