Psychological needs when diagnosed with testicular cancer: findings from a population-based study with long-term follow-up

Authors


Correspondence: Johanna Skoogh, Department of Psychology, University of Gothenburg, Box 500, 405 30 Gothenburg, Sweden.

e-mail: johanna.skoogh@oncology.gu.se

Abstract

What's known on the subject? and What does the study add?

  • There are few large-scale follow-up studies regarding psychological reactions among men diagnosed with testicular cancer; therefore, our knowledge is sparse about the psychological consequences of being diagnosed with and treated for testicular cancer. Moreover, we know little about what kind of psychological support the men would prefer and benefit from.
  • Our study shows that most patients with testicular cancer, regardless of the seriousness of the disease, experience a psychological crisis at diagnosis. Furthermore, we found that most men wish that psychological support, including information about stress and crises reactions and psychological counselling, was offered at diagnosis. Our study highlights the need not only to provide patients with testicular cancer with the best physical treatment but also to take into account the psychological consequences of being diagnosed and offer the men psychological support.

Objective

  • To investigate the psychological needs of patients diagnosed with testicular cancer.

Patients and Methods

  • We identified 1192 eligible men diagnosed with non-seminomatous testicular cancer, treated according to the bi-national cancer-care programmes SWENOTECA I–IV between 1981 and 2004.
  • Using a study-specific questionnaire we asked the survivors if they had experienced some kind of crisis attributable to their cancer diagnosis. We also asked if they were and, if not, if they wish they had been offered information about crisis and stress reactions and professional counselling.

Results

  • We obtained information from 974/1192 (82%) testicular cancer survivors diagnosed at a mean of 11 years before follow-up.
  • Sixty-three percent reported that they had experienced a crisis owing to their diagnosis. For most men (76%) the crisis was at its worst at the time of diagnosis and treatment.
  • Between 1981 and 2004, 145 men (15%) reported that they received information about common stress and crisis reactions and 348 (36%) reported that they were offered counselling.
  • Of the men not informed about stress and crisis reactions and not offered counselling, 353/514 (69%) and 251/403 (62%), respectively, wish they had been. The percentage who reported that they wish that they had been informed or offered counselling did not differ significantly depending on civil status, age at diagnosis or stage of disease.

Conclusions

  • The vast majority of Swedish testicular cancer survivors reported that they experienced a crisis because of their cancer diagnosis.
  • Moreover, regardless of stage of disease, most men reported a need for psychological support at the time of diagnosis and treatment that was not satisfactorily met by the healthcare provision.
Abbreviation
RR

relative risk

Introduction

Even if the masculine stereotype is changing men are still, in many contexts, expected to have less of a need to speak about their feelings than are women. No matter to what extent this is true or not, prejudices that include that of the strong, silent male coping on his own, are problematic [1]. Men typically have smaller social networks than women [2, 3] and are less likely to have others to confide in [4]. Men are also less likely to acknowledge their psychological health, neglecting symptoms and avoiding healthcare [5]. Taken together, these factors may put men at a higher risk for both physical and psychological morbidity [4].

Since the introduction of cisplatin-based chemotherapy in the late 1970s the cancer-specific survival of patients with non-seminomatous testicular cancer has steadily increased and is now >90% [6, 7]. There is a lack of information regarding the psychological consequences of being diagnosed and treated for testicular cancer [8]; however, clinical experience and preparatory interviews with testicular cancer survivors have informed us that many men distinguished their experience with physical care, which they were satisfied with, from their psychological care, which many were dissatisfied with. This background information led us to formulate and incorporate some questions about psychological reactions and needs in a questionnaire administered to Swedish men treated for non-seminomatous testicular cancer between 1981 and 2004.

Patients and Methods

Study Population

In Sweden, the management of adult men diagnosed with non-seminomatous testicular cancer is guided by the Swedish-Norwegian cancer care programmes by SWENOTECA. Since 1981, with a break between 1987 and 1989, clinicians have prospectively reported clinical data to the SWENOTECA database. In this database, we identified 1221 living men diagnosed between January 1981 and December 2004 who on 15 January 2007 were aged 18–75 years and had a residential address in the Swedish population-based register of all citizens. The SWENOTECA database is regularly matched with the Swedish cancer registry, includes patients with tumour stages I–IV, and has close to 100% coverage of the studied population. We excluded 29 patients, including 12 men treated for brain metastases, leaving 1192 eligible men (Table 1). The study was approved by the research ethics committee at The Sahlgrenska Academy in Gothenburg, Sweden.

Table 1. Characteristics of men treated for testicular cancer between 1981 and 2004.
Characteristic 
  1. *Mild (8–10), moderate (11–14) or severe (≥15) depression; Mild (8–10), moderate (11–14) or severe (≥15) symptoms of anxiety. HADS, Hospital Anxiety and Depression Scale.
Total eligible1192
Total participation rate, n (%)974 (82)
Age at follow-up, years 
Mean41
Median39
Range20–74
Age at diagnosis, years 
Mean30
Median29
Range16–64
Years since diagnosis 
Mean11
Median9
Range3–26
Tumour stage at diagnosis, n (%) 
I: no metastases602 (62)
Mk+: increased tumour markers in the blood but no visible tumours41 (4)
II: metastases limited to abdominal lymph nodes)217 (22)
III: metastases in lymph nodes above diaphragm)17 (2)
IV: extra nodal metastases)97 (10)
Other treatment, n (%) 
Retroperitoneal lymph node dissection, self-reported440 (45)
Radiotherapy, self-reported26 (3)
Testosterone supplement, self-reported96 (10)
Civil status at follow-up, n (%) 
Married/Cohabiting708 (73)
Partner but living apart70 (7)
Single176 (18)
Not stated20 (2)
Level of education at follow-up, n (%) 
Compulsory or elementary school or less119 (12)
Secondary school546 (56)
University306 (31)
Not stated3 (0)
Employment status at follow-up (more than one category is possible), n (%) 
Employed849 (87)
Unemployed36 (4)
Student34 (3)
On sick leave30 (3)
Retired59 (6)
Not stated7 (1)
Swedish citizen, n (%) 
Yes, born in Sweden914 (94)
Yes, born outside Sweden39 (4)
No19 (2)
Not stated2 (0)
HADS depression subscale score 
Mean2.7
Median2
≥8, n (%)*81 (8)
HADS anxiety subscale score 
Mean4.3
Median3
≥8, n (%)167 (17)

Construction of Questionnaire

The development of the questionnaire used for the present study followed established routines at the Division of Clinical Cancer Epidemiology, as documented in >90 articles [9-13]. We employed epidemiological methods as adapted to survivorship studies by the hierarchical step model for study design and data interpretation [13].

During an 18-month qualitative phase we interviewed a group of testicular cancer survivors, formulated questions based on the information gained from these interviews and compiled a study-specific questionnaire, primarily focusing on cognitive function. Preliminary versions of the questionnaire were tested face-to-face with 20 testicular cancer survivors, and were thereafter revised and used in a preparatory study before the main data collection took place [14]. The final questionnaire comprised 295 questions. In the present study, we focus on the answers to each of the following six questions: (i) ‘Most of those who are given a diagnosis of cancer experience some kind of crisis’. To what extent does this statement match your own experience when being diagnosed with cancer? (ii) If you experienced some kind of crisis in connection with your illness, when did you feel worst? (iii) Did you at some time during your illness receive information about crisis and stress reactions that are common in connection with a diagnosis of cancer? (iv) Do you wish that you had received information about crisis and stress reactions that commonly arise in connection with a diagnosis of cancer? (v) Were you at any time during your illness offered professional counselling (with a psychologist, social worker, psychiatrist or a similar professional)? (vi) Do you wish that you had been offered some form of professional counselling (with a psychologist, social worker, psychiatrist or a similar professional)? (Table 2). The questionnaire also contained questions about well-being, neurological symptoms, sexual activity, demographics and a psychometric scale (Hospital Anxiety and Depression Scale). Each questionnaire had a code number, making it possible to match answers to the SWENOTECA database.

Table 2. Questions asked and possible answers offered.
 n (%)
‘Most of those who are given a diagnosis of cancer experience some kind of crisis’. To what extent does this statement match your own experience when being diagnosed with cancer? 
Not at all363 (37)
To some extent352 (36)
To a large extent117 (12)
Completely137 (14)
If you experienced some kind of crisis in connection with your illness, when did you feel worst? 
Not relevant, I did not experience any crisis345 (36)
In connection with diagnosis and treatment471 (49)
<1 year after treatment was ended86 (9)
1–2 years after treatment was ended38 (4)
>2 years after treatment was ended28 (3)
Did you, at some time during your illness, receive information about crisis and stress reactions that are common in connection with a diagnosis of cancer? 
No531 (55)
Yes145 (15)
Do not remember292 (30)
Do you wish that you had received information about crisis and stress reactions that are common in connection with a diagnosis of cancer 
Not relevant, I received information about common crisis and stress reactions151 (16)
No245 (26)
Yes560 (59)
Were you at any time during your illness offered professional counselling (with a psychologist, social worker, psychiatrist or a similar professional)? 
No407 (42)
Yes348 (36)
Do not remember216 (22)
Do you wish that you had been offered some form of professional counselling (with a psychologist, social worker, psychiatrist or other professional). 
Not relevant, I was offered professional counselling315 (33)
No242 (25)
Yes, in connection with diagnosis and treatment305 (32)
Yes, <1 year after treatment was ended66 (7)
Yes, 1–2 years after treatment was ended11 (1)
Yes, >2 years after treatment was ended18 (2)

Data Collection

Data collection took place in the 9-month period from 17 January 2007 to 18 October 2007. We initially sent an introductory letter explaining the objectives of the study to all eligible men. Three to four days later we made telephone calls to those whose telephone number was available. To those who agreed to consider participation we sent the questionnaire by post, followed 10 days later by a combined thank you and reminder card. Fourteen days later an interviewer called those who had not returned the questionnaire giving the informants the possibility to ask questions or decline participation. Reminder telephone calls followed for those who had agreed to participate.

Statistics

For each outcome (e.g. ‘Offered professional counselling’), we dichotomized the answers into two categories; ‘No’ and ‘Yes’. The percentage of ‘Yes’ answers was calculated using the number of men answering ‘Yes’, whereas the ‘No’ answers were calculated using the sum of the numbers answering either ‘No’ or ‘I don't remember’, divided by the number of all men answering our questionnaire. We combined the ‘No’ and ‘I don't remember’ category, assuming that those who didn't remember being informed or offered counselling, and those who explicitly claimed that they were not informed or offered counselling, in fact shared similar experiences, i.e. received no information.

Possible effect modifiers, for example stage of disease, civil status, study age and education, were chosen with respect to factors that we expected might possibly be associated with experiencing crisis reactions and/or experiencing a desire to receive information or counselling. The results are presented as relative risks (RRs), with a 95% CI, calculated as the percentage of men with a specific outcome (e.g. the number who considered that their cancer diagnosis implied some kind of crisis), among those who were 32–64 years old at the time of diagnosis, divided by the percentage of men, with the same specific outcome, who were 16–25 years old at the time of diagnosis (Table 3).

Table 3. Prevalence of experienced crisis at diagnosis depending on tumour stage.
 No./Total no. (%)RR (95% CI)
Number who regard their cancer diagnosis implied some kind of crisisYes 
All men606/969 (63) 
Tumour stage I368/600 (61)RR 1.0 (ref)
Tumour stage Mk+25/40 (63)RR 1.0 (0.8–1.3)
Tumour stage II146/215 (68)RR 1.1 (1.0–1.2)
Tumour stage III–IV67/114 (59)RR 1.0 (0.8–1.1)

Results

Of the 1192 eligible testicular cancer survivors contacted, 974 (82%) returned the posted questionnaire (Table 1). The mean age of the participants was 30 years at diagnosis and 41 years at follow-up. A majority (74%) were living with a partner and employed (87%) at follow-up. Almost all men were born in Sweden (94%; Table 1). Non-participants did not differ significantly from participants with respect to age at diagnosis, study age or years since diagnosis (data not shown). For each specific question, a few men did not respond, which explains the different denominators in the Tables.

Of the 606 (63%) men who said that they had experienced a crisis owing to their cancer diagnosis at least to ‘some extent’ (response alternatives: ‘to some extent’, 36%; ‘to a large extent’, 12%; and ‘completely’, 14%), most men (76%) reported that the crisis was at its worst at the time of diagnosis and treatment (Table 2). A greater proportion of younger (16–25 years) men, than older (32–64 years) men (32 vs 15%) reported that the crisis was at its worst at a later time (results not shown).

Compared with the men with tumour stage I, we did not find that a significantly higher percentage of the men with tumour stage Mk+ (RR 1.0; 95% CI 0.8–1.3), with tumour stage II (RR 1.1; 95% CI 1.0–1.2), or with tumour stage III–IV (RR 1.0; 95% CI 0.8–1.1) reported their diagnosis implied some kind of crisis (Table 3). We did not find that the percentage who experienced a crisis was significantly related to civil status, time of treatment, age at diagnosis, time since diagnosis or education (results not shown).

Between 1981 and 2004, 145 men (15%) reported that they had received information about stress and crisis reactions (Table 4). The number who reported they had received such information increased from 4%, for those diagnosed between 1981 and 1986, to 13% for those diagnosed between 1990 and 1999, to 22% for those diagnosed between 2000 and 2004 (Table 4). A substantial proportion (30%) reported that they could not remember if they had or had not received information about stress and crisis reactions (Table 2). The proportion who could not remember did not significantly differ depending on the length of the time interval since diagnosis (results not shown).

Table 4. Information given and counselling offered depending on year of diagnosis and tumour stage.
 No./Total no. (%)RR (95% CI)
No. of men informed about stress and crisis reactions
All men145/968 (15) 
Diagnosed 1981–19867/177 (4)RR 1.0 (ref)
Diagnosed 1990–199954/409 (13)RR 3.3 (1.5–7.2)
Diagnosed 2000–200484/382 (22)RR 5.6 (2.6–11.8)
Tumour stage I81/599 (14)RR 1.0 (ref)
Tumour stage Mk+8/40 (20)RR 1.5 (0.8–2.8)
Tumour stage II35/216 (16)RR 1.2 (0.8–1.7)
Tumour stage III–IV21/113 (19)RR 1.4 (0.9–2.1)
No. of men offered professional counselling
All men348/971 (36) 
Diagnosed 1981–198616/177 (9)RR 1.0 (ref)
Diagnosed 1990–1999141/412 (34)RR 3.8 (2.3–6.2)
Diagnosed 2000–2004191/382 (50)RR 5.5 (3.4–8.9)
Tumour stage I156/601 (26)RR 1.0 (ref)
Tumour stage Mk+17/40 (43)RR 1.6 (1.1–2.4)
Tumour stage II106/216 (49)RR 1.9 (1.6–2.3)
Tumour stage III–IV69/114 (61)RR 2.3 (1.9–2.8)

The percentage who reported that they were offered counselling increased from 9% for those diagnosed between 1981 and 1989, to 34% for those diagnosed between 1990 and 1999, to 50% for those diagnosed between 2000 and 2004 (Table 4). The percentage of men who do not remember if they were offered counselling was approximately constant at ∼20% (Table 2), even as the proportion offered counselling increased over time. Compared with men with tumour stage I, we found that a significantly greater proportion of the men with tumour stage Mk+ (RR 1.6; 95% CI 1.1–2.4), with tumour stage II (RR 1.9; 95% CI 1.6–2.3) and with tumour stages III–IV (RR 2.3; 95% CI 1.9–2.8) had been offered counselling (Table 4).

Of those not informed about stress and crisis reactions, 353 (69%) wished that they had been (Table 5), and of those not offered counselling 251 (62%) wished that they had been (Table 5). These percentages were not significantly different when excluding the ‘I don't remember’ category (results not shown). The percentage who wished they had been informed or offered counselling did not significantly differ depending on tumour stage (Table 5), nor depending on civil status or age at diagnosis (results not shown). Of the men not offered counselling who wished that they had been offered it, the majority (76%) said that the best time to be offered this help was at the time of diagnosis and treatment (results not shown). There was a greater percentage of younger men (16–25 years; 31%) than older men (32–64 years; 17%) who would have preferred to have been offered counselling at a later time (results not shown).

Table 5. Information and counselling requested among those not offered information and those not informed, depending on tumour stage.
 No./Total No. (%)RR (95% CI)
No. of those not informed about stress and crisis reactions who wish they had beenYes 
All men353/514 (69) 
Tumour stage I233/342 (68)RR 1.0
Tumour stage Mk+17/26 (65)RR1.0 (0.7–1.3)
Tumour stage II73/98 (74)RR 1.1 (1.0–1.3)
Tumour stage III–IV30/48 (63)RR 0.9 (0.7–1.2)
No. of those not offered professional counselling who wish they had beenYes 
All men251/403 (62) 
Tumour stage I182/293 (62)RR 1.0
Tumour stage Mk+5/12 (42)RR 0.7 (0.3–1.3)
Tumour stage II44/69 (64)RR 1.0 (0.8–1.3)
Tumour stage III–IV20/29 (69)RR 1.1 (0.9–1.4)

Discussion

The vast majority of the Swedish testicular cancer survivors we studied experienced some kind of crisis owing to their cancer diagnosis. Moreover, most survivors report that they wish they had received information about common stress and crisis reactions as well as been offered professional counselling. We found no relationship between stage of disease and the wish to be offered any of these services.

The large number of testicular cancer survivors who retrospectively reported that they experienced a crisis in connection with their illness suggests most men experienced this as a traumatic event. We found no other study with results based on questions about experienced ‘psychological crisis’ among either patients with testicular cancer specifically or cancer patients in general (Pub Med 120917). Previous studies have instead focused ‘cancer-related stress’ or ‘distress’.

We found three studies examining cancer-related stress among patients with testicular cancer. After orchiectomy, but before additional treatment, Skaali et al. [15] found that 24% (95% CI 17–31%) of the 135 patients with testicular cancer examined reported clinically significant cancer-related stress. These results were based on having a score of ≥26 on the Impact of Event Scale. Using the same questionnaire, in two small studies, Tuinman et al. [16] and Trask et al. [17] found that ∼30% of recently diagnosed patients with testicular cancer were distressed. Our results match these observations as 12% stated they experienced a crisis ‘to a large extent’ and 14% ‘completely’ (Table 2).

Notably, we did not find that a significantly higher percentage of the men with metastatic disease (stage Mk+ –IV) compared with the men without metastatic disease (stage I), experienced a crisis in connection with their illness (Table 3). This result is corroborated by data from other studies that suggest cancer-related variables seem to have an insignificant role for prognostic prediction of those who will suffer most psychologically when diagnosed with testicular cancer [15]. Instead, personality (neuroticism) [18], being single [19], low education [19], unemployment [19] and experiencing side-effects [20] seem to be predictive factors.

About two thirds of the men not informed about crisis and stress reactions wish they had received this information (Table 5). There are many studies showing that patients with cancer in general [21-23], and patients with testicular cancer specifically [24], request more information than they actually receive concerning psychological reactions. Similarly, about two thirds of the men not offered professional counselling wish they had received this offer (Table 5). This finding is consistent with the results of Moynihan [25], who found that when 102 patients with testicular cancer were asked if they would have liked to have been offered counselling, 62 (61%) said yes.

We found no relationship between stage of disease and the wish to be offered counselling; however, we found that whether the man had been offered counselling or not was dependent on stage of disease. Compared with those with tumour stage I, more than twice as many men with tumour stages III–IV had received this offer (Table 4). This might be attributable to practical circumstances which are related to the fact that those who receive more extensive treatment also spend more time in the hospital and therefore receive more support. It is also possible that healthcare professionals assume a relationship between prognosis and psychological needs.

We have no specific information about what the men who wish they had been offered counselling might have wanted to talk about, but the high percentage of men who report they wish they had been given information about crisis and stress reactions suggests one theme might be processing the psychological trauma experienced. In addition to the fact that receiving the diagnosis of a potentially fatal disease might trigger existential thoughts, we also know that many men diagnosed with testicular cancer are occupied by thoughts related to sexual functioning and fertility [26-28]. Previous studies suggest that psychosocial interventions such as psycho-education, supportive therapy (individual or group) and cognitive-behavioural training (individual or group) are effective in reducing both psychological morbidity [29-32] and medical costs [33] for patients with cancer, but we still lack more in-depth knowledge concerning what is effective for which patients [34].

The present study has several strengths. The population-based setting and high participation rate reduced the likelihood of selection-induced problems. Our extensive preparatory process and the use of anonymous, self-administered questionnaires mimic the technique of blinding and thus prevent interviewer-related bias as well as decrease the risk of measurement errors. The retrospective reports concerning the crisis represent a weakness, but asking questions about psychological reactions and needs at the time of diagnosis does not allow for the self-reflection that is possible afterwards. To what extent our results may be generalized to other populations and cultures needs to be further studied.

In conclusion, if our goal is to help men diagnosed with testicular cancer with all consequences of their disease, we must extend our knowledge, not only to provide these men with the best physical treatment and care, but also to learn how we best can help them to handle the psychological reactions that might be evoked in response to the disease. A future research priority is to learn more about what kind of psychological support patients with testicular cancer may benefit from at the time of diagnosis, during therapy and afterwards, and to design and investigate the effectiveness of such interventions.

Acknowledgements

We thank all testicular cancer survivors who have contributed with information and Lawrence Lundgren for language revision. We also want to thank all Swedish uro-oncologists who since 1981 have included their patients in SWENOTECA's protocols. The study was financed by the Swedish Cancer Society (nr: CAN 2006/1350) and The Western Healthcare Region in Sweden.

Conflict of Interest

All authors declare that they have no conflict of interest.

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