ORIGINAL RESEARCH
Distress among Prostate Cancer Patients and Spouses is Associated with Hormone Treatment and Participation in Decision-Making Salminen, E.K., Portin, R. 1 and Nurmi, M.J. 2 1
Department of Oncology and Radiotherapy, 1Neurology and 2Surgery, Turku University Hospital, Finland, POB 52, Fin-20521 Turku. Background: The aim of this study was to chart cancer experience and distress shared between prostate cancer (PC) patients and their spouses, focusing on effects of hormone treatment and treatment decision-making. Patients and methods: This observational prospective study involved 203 PC patients and 194 spouses surveyed within 5 years from being diagnosed with PC. Fifty percent of the patients had received hormone treatment.
Results: Younger (65 years) patients and spouses were significantly more distressed than the older. Patients receiving hormone treatment tended to be more distressed than those not treated (sum of scores, 5.6 vs 4.3, p = 0.017), and the same trend was seen in their spouses (p = 0.08). The spouse experienced difficulties in concentration and decision-making (Chi-squared test, p = 0.012) and somatic symptoms (p = 0.049) more often if the patient suffered the same problems. Use of alcohol/drugs was significantly more common among younger (65 years) spouses (27.8% vs 7.2%, p 0.001) and in those with higher level of education (26.1% vs 12.2%, p = 0.015). Conclusions: Significant associations were observed in distress variables between prostate cancer patients and spouses, especially among younger patients and when hormone treatment was used. Distress among patients was associated with participation in treatment-decision making, and among spouses with age and educational level. Keywords: prostate cancer, spouse, distress, hormone treatment, decision-making
Introduction
The diagnosis of prostate cancer affects not only the patient, but also his family, particularly the spouse, whose routines are consequently altered. A relatively high prevalence of psychological distress and depressive symptoms has been observed among prostate cancer patients (Roth et al. 1998). This calls for recognition and prevention or treatment, as it can cause negative health effects also in the family. Prostate cancer is the most common cancer among males and the second leading cause of death from cancer among men in many countries, including Finland (www.cancerregistry.fi), representing thus a major health issue (Couper et al. 2006). Hormone treatment, especially with androgen deprivation (AD), is increasingly used in prostate cancer not only in the treatment of metastatic disease but also as adjuvant treatment with curative radiotherapy. The therapeutic effect is based on the induction of castration levels of testosterone. An association between low levels of testosterone and depression has been observed in studies with hypogonadal men or elderly men with a low level of testosterone (Barret-Connor et al. 1999), and low testosterone levels have been shown to be associated with an increased incidence of depressive illness in men (Shores et al. 2005). As the first years following the diagnosis of cancer are often the critical time for cancer patients and their spouses (Northouse et al. 2001) we sought to study distress factors among prostate cancer patients and their spouses during the early years of disease. Spouses are expected to be the primary providers of physical and emotional support to the patients, especially during the time when adjustment to the disease is ongoing and uncertainty as to the prognosis is present and strong. The aim of the current study was (1) to provide information on cancer-related distress among prostate cancer patients and
Correspondence: Salminen, E.K., Fax: +358-2-3336884, Email:
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Clinical Medicine: Oncology 2007:1 21–29
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spouses related to hormone treatment and decisionmaking on treatment and (2) to improve health care providers’ understanding of the effects of hormonal treatment on prostate cancer patients and their spouses.
Patients and methods
Patients were included after the acute phase of diagnosis, during radiotherapy or follow-up within five years from diagnosis at two sites, the Department of Radiotherapy and Oncology, Turku University Hospital and at the Rehabilitation Centre, South-Western Finland Cancer Society during the period January–December 2004. By this time, information regarding the extent of the disease had been disclosed, the treatment line chosen and the grave initial anxiety generated by the diagnosis dissipated. The patients with advancing cancer were excluded. The study protocol was approved by the Joint Committee of Ethics for the University of Turku and Turku University Hospital. The survey forms comprised 54 open-ended and/or structured questions validated in a pilot sample of ten patients, and a validated short depression scale used in general practice for screening patients for depression (Keltikangas-Järvinen and Rimon, 1987). A total of seven questions to assess distress (concentration; decision making ability; somatic symptoms; use of alcohol/drugs; guiltiness or loss of reasons to live; irritability; interest in work and hobbies), were rated as 0 = none, 1 = a little, 2 = markedly 3 = considerably. A global measure (distress score, scale 0–21) of distress was defined by calculating the sum of ratings on the seven questions. The sum was then categorised as 6 = not depressed, 7–11 = mild and 12–16 = moderate depression. The term distress is applied when groups are described and compared. The inclusion criteria presumed willingness to participate. The subjects were approached by the investigator and asked to fill in the questionnaire without help from spouse, personnel and anonymously if so wished. The questionnaire items included personal characteristics, educational background, disease history, duration of cancer and its treatments and spousal relationship. The subjects were also asked to what extent they felt content with the information they had received about the cancer and whether they felt they had participated in treatment decision-making. Reasons for non-responding were not studied; 240-paired forms 22
were delivered, 221 (92%) patients and 209 spouses (87%) returned the forms. Those diagnosed earlier than 5 years previously were excluded, leaving a cohort of 203 patients and 194 spouses. Statistical analyses The distress score from the depression scale was the primary variable to be compared between groups and between couples (patients vs spouses). Chi-squared test was used to compare the groups with respect to categorical variables. T-test for independent samples was used for continuous variables. When patients were compared to spouses, the paired samples t-test was applied for continuous variables and Chi-squared or McNemar test, as appropriate, for categorical variables. In mental well-being and distress variables, agreement between couples was described using the kappa coefficient. The kappa values were interpreted as follows: 0.20 indicated poor, 0.21–0.40 fair, 0.41–0.60 moderate, 0.61–0.80 good, and 0.81–1.00 very good agreement. Analysis of variance (ANOVA) was used to test associations between demographic variables (age, education, employment and cancer treatment) and distress score. Statistical analyses were performed using SPSS for Windows, version 14.0 (SPSS Inc., Chicago IL, U.S.A.).
Results
Patient and spouse characteristics are summarised in Table 1. The mean age of the patients was 66 years (46–82). Of the patients 17% were active in working life, 83% were retired. Thirty-eight % had been diagnosed during the previous year, forty two % one year ago and 20% 2 to 5 years ago. Fifty % of the patients had received hormone treatment (androgen-deprivation therapy, AD) either with (39%) or without (11%) radiotherapy; sixteen % were treated with surgery only and 34% with radiotherapy only. Forty-four per cent rated their physical condition as good or excellent, and 52% moderate, four % poor or very poor. The corresponding figures for self- expressed mental wellbeing were 48%, 47% and 5%, respectively. The mean age of spouses was 63 years (42–84). Of spouses 34% felt their physical condition to be good or excellent, sixty one % moderate, five % poor or very poor. The corresponding figures for self-expressed mental well-being were 35%, 62% and three %, respectively. Clinical Medicine: Oncology 2007:1
Distress in prostate cancer
Table 1. Characteristics of patients and spouses. Patients Number responding Mean age (range) years 63 64–71 72 Education Non academic Academic Employment Not working/retired Working Previous treatment Surgery Radiotherapy Hormone therapy Radiotherapy and hormone therapy1 Years since diagnosis 1 1 2–4 Physical well-being good/excellent moderate poor Mental well-being good/excellent moderate poor 1 2
Spouses
203 66.1 78 65 58
(46–82) 38.8 32.3 28.9
194 63.4 102 55 36
(42–84) 52.8 28.5 18.7
183 13
93.4 6.6
179 13
93.2 6.8
167 35
82.7 17.3
141 52
73.1 26.9
33 68 22 79
16.3% 33.7% 10.9% 39.1%
302 64 22 77
15.5% 33.2% 11.4% 39.9%
78 85 40
38.4% 41.9% 19.7%
742 80 40
38.1% 41.2% 20.6%
87 104 8
43.7% 52.3% 4.0%
64 117 11
33.3% 60.9% 5.7%
96 93 11
48.0% 46.5% 5.5%
67 119 6
34.9% 62.0% 3.1%
One patient had received radiotherapy, hormone therapy and chemotherapy Previous treatment and years since diagnosis are in the patients’ characteristics.
Agreement on basic situation between patients and spouses Fifty-nine percent of couples agreed on the mental well-being (kappa = 0.236). In 23% of couples both patient and spouse felt they had good (or very good) mental condition, 34% reported moderate and 1% poor (or very poor) mental condition. Outright disagreement (good or very good vs poor or very poor) was reported only by three couples (1.6%). Partner relations between patient and spouse was reported to have improved after cancer diagnosis in 29% of couples, it had worsened in 3.0%, and others felt it to have remained unchanged from that previous to cancer. Distress In general, younger (64 yrs) patients and younger spouses were more distressed than older Clinical Medicine: Oncology 2007:1
(65 yrs), sum of scores 5.7 vs 4.4 (p = 0.017) in patients and 5.1 vs 3.2 (p = 0.001) in spouses. Among patients and spouses in global estimation of baseline characteristics associated with distress, age was the most significant influencing parameter (Table 2), followed by hormone treatment. Among patients, the association of hormone treatment with all distress variables was significant. The percentage of patients with distress among those treated with AD was 38.3% compared to 23.3% not treated (ANOVA p = 0.024). Patients receiving AD tended to be more distressed than those not treated (mean score 5.6 vs 4.3, p = 0.017) and the same trend was seen in spouses (4.8 vs 3.8 p = 0.08). A significant association was observed between patients and spouses in distress variables such as concentration and decision-making ability (Chi-square p = 0.012), and somatic symptoms, (Chi-square p = 0.05), which worsened, alcohol/ 23
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Table 2. Demographic characteristic associated with distress among patients (2a) and spouses (2b). 2a. Patient characteristics vs distress
N
Mean distress score (SD)
ANOVA p-value
Age 46–63 64–71 72–84
77 64 55
6.1 (3.9) 4.5 (3.3) 4.0 (3.0)
0.003
Education Basic level Higher level
151 40
5.0 (3.8) 5.0 (3.8)
0.899
Employment Yes No
35 162
5.3 (3.8) 4.9 (4.0)
0.649
Time since diagnosis 1 year 1–2 years 2–5 years
77 83 38
4.8 (3.8) 5.2 (3.7) 4.8 (4.3)
Hormone treatment Yes No
107 90
5.6 (3.8) 4.3 (3.8)
0.017
Participated in decision-making Yes No
143 46
4.7 (3.8) 6.3 (3.6)
0.015
Age 3 classes 63 64–71 72
102 54 36
5.1 (4.2) 3.9 (3.6) 2.8 (2.9)
Education 2 classes Higher level Basic level
50 141
4.6 (4.0) 3.9 (3.7)
0.285
0.105
0.833
2b. Spouse characteristics vs distress
Employment Yes No Time since diagnosis 1 1–2 2–5 years
52 140
5.1 (3.9) 4.0 (3.9)
74 79 40
3.8 (3.8) 4.7 (3.9) 4.6 (4.4)
Hormone treatment (patient) Yes No
109 83
4.8 (4.1) 3.8 (3.8)
drugs use (Chi-square p = 0.02), sense of guilt, loss of reason to live (Chi-square p = 0.04), and irritability and proneness to cry (Chi-square p 0.001) increased. If the patient felt guilty, the spouse felt guilty more often compared to spouses of patients without such feelings (30% vs 15%, p = 0.04). Younger subjects were more vulnerable than older. Increased use of alcohol/drugs was 24
0.008
0.353
0.085
significantly more common among younger patients (p = 0.002), this with higher level of education (p = 0.02). The distribution of distress scores between patients and spouses is shown in Figure 1. The corresponding answers distribution scores and their significance in Table 3. The global distress measure of the above scores was similar among patients and spouses (distress score 4.9 Clinical Medicine: Oncology 2007:1
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Figure 1. Distribution of answers on distress variables (black = patients, white: spouses, 1 = Q1, 2 = Q2, 3 = Q3, 4 = Q4, 5 = Q5, 6 = Q6, 7 = Q7).
vs 4.3, p = 0.08). However, when couples surveyed at the clinic and those surveyed at the rehabilitation were analyzed separately, the distress among patients was significantly higher than that of the spouses at the clinic (p = 0.011, 95% CI 0.04–0.31), whereas at the rehabilitation no such difference was found (p = 0.860, 95% CI –0.11–0.13). Participation in decision-making The majority of patients, seventy-six % felt they had participated in decision-making on their treatment, twenty-five % of patients not; sixteen % felt they had not been allowed to participate, whereas four % of respondents did not wish to participate in decision-making on their treatment. Patients who felt they had participated in treatment decisions had lower distress scores (mean 4.7, SD 3.8) than those who did not (6.3, SD 3.6) (p = 0.015). Failing to participate in decision-making was associated with increased distress among patients (p = 0.009, Fig. 2) and in these patients the distress score exceeded the criteria for depression (6).
Discussion
We here report on a prospective study which established that prostate cancer patients’ distress related to their cancer is shared by the spouse, and that distress is associated with age, hormone treatment and participation in treatment decision-making. There was a significant association between the Clinical Medicine: Oncology 2007:1
distress level of the patient and the spouse, and this association was higher than that reported for average Finns (Lindeman et al. 2000). Caregivers should thus actively orientate to the patient’s spousal and family situation and aim at improving it by referring them to psychosocial counselling or participation in rehabilitation. It is of particular note that failure to participate in decision-making was associated with higher distress level. The consequences of PC are manifold; the diagnosis has a strong impact on the everyday life of the patient and his family in many ways directly and indirectly by affecting employment (Bradley et al. 2005), social activities, sexual partnership and in general the couple’s mutual relations, communication in the family and quality of life (Salminen et al. 2003). Daily routines are altered in consequence of the man’s cancer and its treatment, especially when the treatment is associated with adverse effects such as those seen in AD. Increasing dissatisfaction with the spousal relationship has previously been reported both in a cross-sectional study 4.3 years after treatment (Neese et al. 2003) and a prospective one during a 6 months’ period (Couper et al. 2006). In the current study, however, most couples reported that their relationship had improved after the diagnosis. This discrepancy in reports most probably reflects the selection bias due to highly motivated spouses participating with patients in rehabilitation in the current study. 25
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Table 3. Answers to the distress questions Q1 to Q7 in Figure 2 by patients and spouses. The sum of all distress variables (score 0–3 in each). The association and agreement between patients and spouses was assessed.1
Q1
Q2
Q3
Q4
Q5
Q6
Q7
Sum of scores Q1–Q7
Patients
Spouses
An association p-value
Agreement Kappa*
(%)
None A little Markedly Considerably None A little Markedly Considerably None A little Markedly Considerably None A little Markedly Considerably None A little Markedly Considerably None A little Markedly Considerably None A little Markedly Considerably N
46.0% 35.9% 15.7% 2.5% 49.2% 33.8% 14.4% 2.6% 43.9% 36.2% 16.8% 3.1% 21.4% 30.7% 30.7% 17.2% 77.3% 17.2% 5.1% 0.5% 80.0% 15.9% 4.1% 0.0% 40.5% 42.6% 13.8% 3.1% 198
48.2% 33.2% 15.5% 3.1% 47.1% 35.1% 15.2% 2.6% 51.8% 31.9% 14.1% 2.1% 44.4% 26.7% 21.4% 7.5% 80.7% 13.5% 4.7% 1.0% 81.6% 14.2% 2.6% 1.6% 43.8% 35.4% 17.7% 3.1% 193
0.407
0.060
53%
0.0122
0.185
59%
0.386
0.060
53%
0.0492
0.126
60%
0.0152
0.081
73%
0.0382
0.153
74%
0.0012
0.276
65%
Mean Median SD Min Max
5.0 4.0 3.8 0 16
4.4 3.5 4.0 0 16
0.0763
*Identical answers coefficient. 1 The categories a little’, ‘markedly’ and ‘considerable’ were combined before analysis. 2 Positive association. 3 Paired samples t-test.
A review of publications on the psychosocial effects of prostate cancer has shown marked psychosocial effects of the disease also on the spouse, who in the majority of studies was even more distressed than the patient and could remain distressed even years after his death (Couper et al. 2006). In the current study no such difference was observed other than among couples surveyed at the clinic, probably due to bias caused by selection (rehabilitation). The younger spouses in the current study were more vulnerable and tended to use more alcohol and drugs than before cancer came into the family. Spousal distress appears 26
to decrease with time, possibly indicating disenchantment with the marital relationship (Couper et al. 2006), a phenomenon not however observed in the current study, where couples expressed more improvement or maintenance than worsening of the relationship. In the current study however, the couples expressed more improvement in the spousal relationship than worsening. This for its part reflects differences in study cohorts, with recognition of the limitation of the study arising from half of the couples having been recruited on the rehabilitation courses, where agreement was observed also in the Clinical Medicine: Oncology 2007:1
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80 70 60
%
50 40 30 20 10 0
