Distress among Prostate Cancer Patients and Spouses is Associated with Hormone Treatment and Participation in Decision-Making

Abstract

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 hypo-gonadal 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 spouses related to hormone treatment and decision-making 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 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 well-being were 48%, 47% and 5%, respectively.

Table 1.

Characteristics of patients and spouses.

	Patients		Spouses
Number responding	203		194
Mean age (range) years	66.1	(46–82)	63.4	(42–84)
≤63	78	38.8	102	52.8
64–71	65	32.3	55	28.5
≥72	58	28.9	36	18.7
Education
Non academic	183	93.4	179	93.2
Academic	13	6.6	13	6.8
Employment
Not working/retired	167	82.7	141	73.1
Working	35	17.3	52	26.9
Previous treatment
Surgery	33	16.3%	30²	15.5%
Radiotherapy	68	33.7%	64	33.2%
Hormone therapy	22	10.9%	22	11.4%
Radiotherapy and hormone therapy¹	79	39.1%	77	39.9%
Years since diagnosis
<1	78	38.4%	74²	38.1%
1	85	41.9%	80	41.2%
2–4	40	19.7%	40	20.6%
Physical well-being good/excellent	87	43.7%	64	33.3%
moderate	104	52.3%	117	60.9%
poor	8	4.0%	11	5.7%
Mental well-being
good/excellent	96	48.0%	67	34.9%
moderate	93	46.5%	119	62.0%
poor	11	5.5%	6	3.1%

One patient had received radiotherapy, hormone therapy and chemotherapy

Previous treatment and years since diagnosis are in the patients’ characteristics.

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.

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 (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/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 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 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).

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).

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	77	6.1 (3.9)
64–71	64	4.5 (3.3)	0.003
72–84	55	4.0 (3.0)
Education
Basic level	151	5.0 (3.8)	0.899
Higher level	40	5.0 (3.8)
Employment
Yes	35	5.3 (3.8)	0.649
No	162	4.9 (4.0)
Time since diagnosis
<1 year	77	4.8 (3.8)
1–2 years	83	5.2 (3.7)	0.833
2–5 years	38	4.8 (4.3)
Hormone treatment
Yes	107	5.6 (3.8)	0.017
No	90	4.3 (3.8)
Participated in decision-making
Yes	143	4.7 (3.8)	0.015
No	46	6.3 (3.6)
2b. Spouse characteristics vs distress
Age 3 classes
<63	102	5.1 (4.2)
64–71	54	3.9 (3.6)	0.008
>72	36	2.8 (2.9)
Education 2 classes
Higher level	50	4.6 (4.0)	0.285
Basic level	141	3.9 (3.7)
Employment
Yes	52	5.1 (3.9)	0.105
No	140	4.0 (3.9)
Time since diagnosis
<1	74	3.8 (3.8)
1–2	79	4.7 (3.9)	0.353
2–5 years	40	4.6 (4.4)
Hormone treatment (patient)
Yes	109	4.8 (4.1)	0.085
No	83	3.8 (3.8)

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

		Patients	Spouses	An association p-value	Agreement Kappa^*	(%)
Q1	None	46.0%	48.2%	0.407	0.060	53%
	A little	35.9%	33.2%
	Markedly	15.7%	15.5%
	Considerably	2.5%	3.1%
Q2	None	49.2%	47.1%	0.012²	0.185	59%
	A little	33.8%	35.1%
	Markedly	14.4%	15.2%
	Considerably	2.6%	2.6%
Q3	None	43.9%	51.8%	0.386	0.060	53%
	A little	36.2%	31.9%
	Markedly	16.8%	14.1%
	Considerably	3.1%	2.1%
Q4	None	21.4%	44.4%	0.049²	0.126	60%
	A little	30.7%	26.7%
	Markedly	30.7%	21.4%
	Considerably	17.2%	7.5%
Q5	None	77.3%	80.7%	0.015²	0.081	73%
	A little	17.2%	13.5%
	Markedly	5.1%	4.7%
	Considerably	0.5%	1.0%
Q6	None	80.0%	81.6%	0.038²	0.153	74%
	A little	15.9%	14.2%
	Markedly	4.1%	2.6%
	Considerably	0.0%	1.6%
Q7	None	40.5%	43.8%	<0.001²	0.276	65%
	A little	42.6%	35.4%
	Markedly	13.8%	17.7%
	Considerably	3.1%	3.1%
Sum of scores	N	198	193
Q1–Q7	Mean	5.0	4.4	0.076³
	Median	4.0	3.5
	SD	3.8	4.0
	Min	0	0
	Max	16	16

Identical answers coefficient.

The categories a little’, ‘markedly’ and ‘considerable’ were combined before analysis.

Positive association.

Paired samples t-test.

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).

Figure 2.

Distribution of distress score according to participation in decision-making (black = yes, white = no, score <6 = no distress, 7–11 mild, 12–16 moderate. Failing to participate in decision-making was significantly associated with increased distress scores (p = 0.009).

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 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.

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 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 distress level. Half however, were recruited as consecutive patients attending the clinic, and among them the distress level was higher among patients than spouses.

Psychological distress in spouses of early-stage prostate cancer patients relates more to psychosocial than medical factors (Eton et al. 2005) and could be improved with communication and/or psycho-educational group intervention (Manne et al. 2004). Discrepancy has been reported between patients’ and spouses’ perceptions of prostate cancer when the spouses are not given adequate information on the cancer situation (Boehmer and Clark, 2001). Spouses may complain of the lack of information on their husband's condition due to inadequate communication from their husbands and care providers. In the present study younger patients and spouses and those receiving hormone treatment were more distressed indicating that special attention is called for in such cases. Ideally both should be involved in discussions concerning decisions about prostate cancer and its treatment.

Earlier studies have shown that one to two years after diagnosis and treatment about half of PC patients and three quarter of spouses experience some degree of general distress about the disease (Cliff and MacDonagh, 2000). In the U.S.A., spouses of PC patients experienced greater distress than do the patients themselves, and more frequently had related problems with insomnia and fatigue (Kornblith et al. 1994). This was not the case in the current study, where patients expressed slightly more distress than spouses, but the difference was not statistically significant. The proportions appear to be culture-dependent and also may be related to the age of the subjects. Also dependency on the timing of the study related to the diagnosis has been shown (Couper et al. 2006). The spousal distress was decreased and that of the patients increased in the second assessment. In that study spousal distress was decreased and patients’ distress increased in the second assessment.

Hormone treatment is increasingly used also as adjuvant treatment for patients receiving curative radiotherapy in prostate cancer and half of the patients in the present series had undergone it. Addressing specifically the effects of hormone treatment with androgen deprivation (AD) on mood and depression, Pirl and colleagues (2002) noted a significant rate of major depression occurred in men with prostate cancer patients treated with AD, with particular risk to men with a history of depression. Also in the current study patients treated with AD reported significantly more distress symptoms than patients after other treatments. Interestingly, a similar trend was observed among their spouses. This is in accord with a recent review of available studies where patients’ and spouses’ mood has been studied (Couper et al. 2006). Importantly, a past history of depression seems to be associated with a current diagnosis of depression, and this needs to be acknowledged when AD is recommended to such patients.

Another important finding here was, that participation in treatment decision-making was associated with distress, those who failed to participate being more distressed than those who did, their mean score exceeding the depression criteria. Discussion on treatment recommendation will thus help couples in coping with cancer in everyday life, since not knowing the facts may further increase distress among spouses. Spouses are assumed to be the primary providers of physical and emotional support to patients and in this study appeared to adapt to the man's disease supportively, unselfishly and with great empathy. Supportive attitude of the partners together with patients’ resilience are likely to maintain the relationship, and in turn, rejection of the partners and resignation to this trouble results in the disruption of the spousal ties (Navon and Morag, 2003). The conclusion in that study was to train oncology nurses specialising in the unique difficulties of PC patients and their spouses for organisation intervention focusing on relevant information and counselling. Our view is that the role of rehabilitation arranged by cancer society and patient support group organized is important in information needs which may appear even later after diagnosis and treatment.

The limitation of the present study lies in self-filled questionnaires and their interpretation and in patient selection due to recruitment from among rehabilitation course participants. Some spouses of patients interviewed at the clinic did not return the questionnaires, a factor, which must be recognised when the groups are compared. As in other reports on information flow (Boehmer and Clark, 2001) the response rate in the present study was based on the number of spouses receiving the questionnaire from patients. This explains the slight imbalance in spouse numbers between clinic and rehabilitation course. Although it was stressed in the instructions that the spouse should fill in the questionnaire independently without consulting the patients, this could not be precluded. Further limitation of this study was the cross-sectional design. Although appropriate in terms of feasibility and validity, it does not provide stability of ratings over time, this being a known feature of cross-sectional study set-ups (Knight et al. 2001). However, with this approach it was possible to contact a fairly large number of consecutive patients and spouses within a year in circumstances where motivation and willingness to participate was high. It was thus possible to gain information related to their everyday coping and perceptions. Although cancer itself is not a contagious disease, the distress and depression associated with it seem to be shared between the patients and his spouse. The current sample showed remarkable everyday problems calling for considering and intervention in clinical practice.

Conclusion

Awareness of how male cancer and its treatment affect the spouse, and on the other hand of the crucial role of the spouse in providing support and care are important for health personnel. The degree of sharing between prostate cancer patients and spouses is strong and appears to lead to mood harmonising between them. Awareness of this especially in respect of hormone treatment and participation in decision-making is thus important in helping the physician to reduce distress related to cancer and its treatment among prostate cancer patients and spouses.

Footnotes

Acknowledgements

This study was supported by a research grant from Turku university hospital EVO. The authors express their special thanks to the patients who agreed to participate this survey. Without their co-operation and contribution, this study could not have been realised.

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