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Abstract
Objective and setting To study longitudinally cancer-related experiences of spouses of patients with prostate cancer and the predictors of their psychological recovery and quality of life (QOL) by following the participants of our previous survey at primary cancer treatment in a university hospital.
Design A 5-year longitudinal cohort design.
Participants and procedure A follow-up questionnaire was mailed to the female spouses/partners who participated in our previous survey (n=104). We quantitatively explored the spouses’ prostate cancer-related experiences since the previous survey and measured their current psychological symptom distress and well-being/QOL. Seventy-seven (74%) of the initial participants responded.
Outcomes The main outcome measures were the spouses’ psychological recovery (psychological symptoms at the initial survey vs currently) and well-being/QOL (depressive symptoms, domains of QOL) at 5 years. We analysed their predictors with regression analyses.
Results The treatment had been prostatectomy in 70% of the patients. Psychological distress had alleviated in 76% of spouses (p<0.001) and emotional changes decreased (p=0.02), but a deteriorating impact on the partnership (from 4% to 16%) and on sex life (‘strong impact’ from 23% to 37%) had increased. The outcomes were inversely associated with negative depression-related psychological symptoms and emotional changes either initially or at follow-up. However, some early experiences also predicted the outcomes when other factors were controlled for. Prostate cancer-related information received by the spouses from several sources (leaflets/handouts, TV/radio, internet) predicted better recovery and well-being/QOL, whereas the patients’ prostate cancer and treatment-related symptoms (pain, irritability/anger, bowel dysfunction) predicted poorer recovery and well-being/QOL in spouses.
Conclusions A major negative impact of prostate cancer was experienced by the spouses still 5 years after primary treatment. Early prostate cancer-related experiences predicted long-term psychological recovery and QOL. Responding to the early information needs of spouses and effective symptom management for the patients are likely to enhance the spouses’ long-term recovery and well-being.
- rehabilitation medicine
- social medicine
- prostate disease
- quality of Life
- urological tumours
- epidemiologic studies
Data availability statement
Data are available upon reasonable request. Data supporting the findings of this study are available within the article and from the corresponding author upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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- rehabilitation medicine
- social medicine
- prostate disease
- quality of Life
- urological tumours
- epidemiologic studies
STRENGTHS AND LIMITATIONS OF THIS STUDY
The spouses completed a similar questionnaire shortly after primary prostate cancer treatment and 5 years later, which ensured valid follow-up information.
The participation rate was high as 74% of the spouses participating in the initial survey responded.
The psychosocial topics evaluated were important because the factors measured at primary treatment accounted for nearly half or more of the variance of the 5-year recovery and well-being scores.
A limitation of the study was the relatively small number of spouses studied. Also, since in most patients, the treatment was prostatectomy, we were not able to compare different types of prostate cancer treatment.
The follow-up comprised one measurement and therefore there is only retrospective information on the course of the factors over the 5-year follow-up.
Introduction
Prostate cancer is a major public health concern. It is the most common cancer among men in most countries and almost 500 000 new cases were diagnosed in Europe in 2020 (https://gco.iarc.fr). Its incidence is increasing due to the ageing of the population and early diagnosis by widespread testing for prostate-specific antigen.1–5 Nevertheless, the prognosis is good; in Finland, the relative 5-year survival rate is 93.5% and there are currently 57 000 men alive after a prostate cancer diagnosis (www.cancerregistry.fi). Thus, many men live for many years after prostate cancer diagnosis. However, many of them suffer from negative effects resulting from all forms of active prostate cancer therapy, including urinary, sexual and bowel dysfunction,1–12 which may persist and have a lasting impact on the quality of life (QOL) and well-being outcomes.5 9 12–15 Also, prostate cancer and the consequences of its treatment are likely to affect the patients’ social relationships, as well as the well-being of their spouses/intimate partners, family members and significant others.16 Therefore, up-to-date treatment for prostate cancer includes both an oncological approach to the disease and a broader view of cancer from an interpersonal and social relationship perspective.16 17
A vast majority of men with prostate cancer are married or cohabiting; in Finland over 80%.12 Prostate cancer is likely to impair the spouses’ and intimate partners’ emotional life and well-being and causes distress.18–26 On the other hand, social support from a spouse can alleviate the patient’s psychological distress27 and distressed spouses may prevent the adjustment of patients.18 The partners may be even more distressed than the patients,17–24 28 but these findings may be due to that women adopt a different role or report more cancer distress than men.29 30 There is also evidence of transmission of distress from male patients to their female partners.28 Patients with cancer and their partners are interdependent and cancer affects their shared emotional and everyday life.29 The couples may react to cancer as an emotional unit rather than as individuals. Thus, the focus of research has broadened from the individual (patient or partner) toward a dyadic perspective, and nowadays dyadic factors and outcomes in couples are often studied.25 31–35
Instead of clinical–medical characteristics, psychological and psychosocial factors seem to be the most important ones influencing the distress of patients with cancer and their spouses/partners.17 18 29 However, it is not clear which factors are important, because there are major differences between studies in the psychological concepts and processes investigated (including eg, QOL, distress, coping with cancer, emotional functioning, illness uncertainty, information seeking, (non)supportive behaviours, partner/spousal support, relationship functioning/quality/intimacy, relationship satisfaction), in definitions and assessment and in theories and models applied.16 25 26 34 35 This has led to a scattered view of the research area31 and hampers comparisons between the studies. We have previously reported on a survey of psychological distress and prostate cancer-related experiences of the spouses of prostate cancer patients at the time of diagnosis and primary treatment.23 24 Many suffered from distressing experiences, and the psychological symptom distress was predicted by the psychological response to cancer and cancer-related experiences but alleviated by emotional social support received from a doctor. The support and received information also enhanced the spouse’s capability to support the patient, the patient’s pain and mood disturbances had a greater impact on sex life than sexual dysfunction and urinary symptoms and the spouse had given more support to the patient if he suffered from side effects, especially pain and sexual dysfunction.
We now report on a 5-year follow-up survey of the spouses of patients with prostate cancer participating in our previous similar survey.23 24 To investigate various post-treatment experiences and predictors of long-term psychological recovery and well-being of the spouses, we recorded their prostate cancer-related experiences during and at 5 years after the primary treatment and measured their psychological recovery (difference between psychological symptom distress at primary treatment/the previous survey and at 5 years) and well-being (depressive symptoms, domains of QOL) at 5 years. We analysed changes in the experiences between the initial measurement and at 5 years, and especially investigated predictors of the psychological recovery and well-being.
Methods
Participants and procedure
The partners (spouse, intimate partner, girlfriend; n=104) of a consecutive sample of newly diagnosed patients with prostate cancer from the Urology Outpatient Clinic of Tampere University Hospital, Finland, who had participated in our previous survey,23 24 were studied 5 years later (between March 2015 and June 2016) by mailing to them a follow-up questionnaire from the hospital. In the initial survey,24 118 patients gave their consent to send the survey questionnaire to their spouse/partner, and 106 (90%) spouses returned a completed questionnaire. Participants were on average 60 (SD 8.0) years old women and the patients on average 62 years old (SD 7.8); most patients were treated with prostatectomy (67%) and the two patients undergoing external beam radiotherapy were excluded.
In the current survey, two spouses were excluded because an address was not found and one because the patient’s prostate cancer diagnosis was from an earlier period. One spouse had died. Sixteen spouses did not respond. After 1 month, we sent a further questionnaire to non-respondents. Finally, 77 returned questionnaires were accepted for the study covering 74% of the spouses in the initial survey. The primary prostate cancer treatment had been radical prostatectomy (70%), brachytherapy (13%), hormonal therapy (androgen deprivation; 10%) or active surveillance (5%, n=4; in one of these cancer had relapsed/recurred, but we have no information on the further treatment). Respondents had more often a university degree than non-respondents (p=0.05); no other background variable associations were found.
Survey questionnaire
Most questions of the initial questionnaire were repeated (rephrased if necessary). Psychological symptom distress was re-measured by the eight psychological symptoms of the Rotterdam symptom checklist (RSCL; irritability, depression, nervousness, desperate feelings about the future, tension, anxiety, difficulty concentrating and worrying; scale 0–3 in each item evaluated from the past week).36 To improve the methodology, two instruments on the spouses’ current well-being/QOL were added: the Depression Scale DEPS37 measuring 10 feelings and depressive symptoms (scales 0–3) during the previous month and the WHO Quality-of-Life Scale (WHOQOL-BREF).38
The prostate cancer-related experiences asked included sufficiency of the professional information and care received; information received on prostate cancer and its treatment/rehabilitation from different sources and social support received from different sources (see figure 1); emotional changes due to prostate cancer (7 given emotions); impact of prostate cancer on the relationship between the couple, every-day life and sex life; change in the financial situation of the family; prostate cancer and treatment-related symptoms in patients (10 given symptoms) and their current impact on the couple’s life. The degree of the experiences, impacts and side effects was evaluated with 4-point scales from ‘not at all’ to ‘much’ or with dichotomous no/yes answers. Most questions concerned the period since the previous survey, some also the present situation.
Prostate cancer-related (A) information and (B) social support received at primary treatment and during the 5 years (at primary treatment, the information and social support received was measured as no/yes in the sources and in the follow-up with scales 0–3).
Patient and public involvement
The questionnaire of the initial survey23 24 was designed in collaboration with the prostate cancer patient organisation Eturauhassyöpäpotilaiden tuki ry ERSY and the members of the ERSY support group for spouses. It was tested in the support group women. The questionnaire shares many questions with the questionnaire of our nationwide survey for patients with prostate cancer12 15 initiated by and designed with the ERSY. The studies focused on issues given and raised by patients with prostate cancer and their spouses.
Statistical analyses
The data were described by prevalence (%), means and SD, and comparison of means. Differences in variables between the initial and the follow-up survey were analysed by cross-tabulations (Pearson χ2) and comparison of means (paired sample t-test). To describe the change in psychological symptom distress, a psychological recovery index was created by subtracting the RSCL psychological symptom score at 5 years (Alpha 0.90) from the score at the initial survey (Alpha 0.87), thus resulting in a scale describing the recovery at 5 years (higher value=better recovery). Multivariate linear and logistic regression analyses were performed to investigate the predictors of the main outcome measures separately (recovery index, the well-being indicators by the DEPS and by the WHOQOL-BREF), and to obtain regression coefficients (Bs) with corresponding two-tailed 95% CIs and cumulative R squared (R2). We first entered background and treatment factors and the factors evaluated at the initial survey into the model and, next, also the variables measured in this follow-up survey. A p value of ≤0.05 was considered statistically significant. Data were analysed by SPSS V.27.0 (IBM) and STATA V.17.0 (StataCorp).
Results
The spouses’ average age was 65 (SD 8.7) years and the couples’ relationship had lasted approximately 36 (SD 15.1) years. Seven (9%) of the men/patients had died, but three of their spouses answered despite. Ten per cent of the spouses experienced a change in household members during the follow-up: usually child/children had moved in (4%) or child/children have moved out (8%). At follow-up, only 10% had children living at home (at the initial survey 21%). During the follow-up, 30% of the spouses retired (42% were retired at the previous survey) and a new chronic disease was diagnosed in 27% (musculoskeletal disease 12%, hypertension 5%, coronary heart disease 4% and cancer 4%). Two widowed spouses had a new intimate partner. Five per cent reported a deteriorated financial situation of the family due to prostate cancer. Of the men/patients, 38% retired during the follow-up and a new chronic disease was diagnosed in 33% (hypertension 8%, cardiovascular disease, diabetes and a memory disorder 6.5% each). Seven prostate cancers had relapsed/recurred (reported by spouses) and six men had received active treatment for the recurrence.
Outcomes: psychological recovery and well-being/QOL
Psychological symptom distress had alleviated in 76% of the spouses and become worse in 21%. The mean of the psychological recovery index was 4.13 (SD 5.96, range −8 to 18); the score mean was 9.7 (SD 5.8) at primary treatment and 5.5 (SD 5.4) at 5 years (p<0.001). Older age predicted a poorer recovery (B −0.29, p<0.001) while no other initial background or clinical factors had an impact. A deteriorated financial situation in the follow-up was associated with poorer recovery (p<0.01).
Well-being by the DEPS total summary scale ranged from 0 to 21 (mean 5.51, SD 5.36, n=76; Cronbach’s Alpha 0.90). The WHOQOL-BREF domains physical health (mean 27.03, SD 5.27, n=74; Alpha 0.89), psychological health (mean 22.07, SD 3.86, n=74; Alpha 0.86) and the overall QOL and General Health index (combining ‘overall QOL’ and ‘satisfaction with health’, mean 7.43, SD 1.42, n=77; Alpha 0.67) were used in the predictor analyses; data on domains social relationships (n=71; Alpha 0.67) and environment (n=74; Alpha 0.78) are not shown.
Prostate cancer-related experiences
Some spouses reported that they had received insufficient information on prostate cancer (14%), on treatment options (21%) and on treatment side effects (23%) during the follow-up (percentages of rather and completely insufficient combined; 1–4 scale means 1.6–1.9). Dissatisfaction with the care given by the doctors and nurses to the men/patients was reported by 29% and with the care given to the spouses themselves by 52% (means 2.0 and 2.7).
Information on prostate cancer was received from multiple sources, as we previously found at primary treatment. Information was more often received in all the sources (figure 1). The most important sources were still the man/patient (89%) and leaflets/handouts (84%). The information sources newspapers/magazines (22% vs 80%), TV/radio (22% vs 71%) and books (10% vs 54%) had become much more common. The internet (64%; more in the younger, p=0.03) and TV/radio (71%) were important as well. Also, the total number of information sources increased (B 0.70, p=0.002) and was now 6.0 (SD 2.5), and all spouses reported at least one such source at follow-up.
Social support received had become more common in all the sources (figure 1), especially the support from leaflets/handouts (15% vs 68%), nurses (4% vs 33%), relatives (27% vs 53%) and spouses of other patients (5% vs 29%). Social support received from a doctor tripled (11% vs 33%). In the follow-up, the most important support sources were the man (79%), leaflets/handouts (68%), the children (63%) and friends (58%).
Emotional changes due to prostate cancer had usually decreased (table 1). However, fluctuating mood, anger and grief were as common as at primary treatment. Emotional changes (any) emerged in 32% (initially no changes but changes at 5 years) and disappeared in 21%, while there were no changes in either measurement in 42%.
Presence of emotional changes due to prostate cancer at primary treatment and in follow-up
Prostate cancer and treatment-related symptoms in patients (reported by spouses) were still common at 5 years (figure 2). In comparison with the situation at primary treatment, urinary incontinence and pain were relieved (p values <0.001 and 0.06) and sweating/hot flushes and bowel dysfunction increased (p values <0.05). When prostatectomy was the primary treatment, there was more sexual dysfunction (age adjusted p=0.001), and after brachytherapy less sexual dysfunction, bowel dysfunction and sweating/hot flushes (p values ≤0.05). The current impact of the symptoms on the couple’s life (scale 0–3) was weaker than at primary treatment (means 0.85 vs 0.77, p=0.02).
Prostate cancer and treatment-related symptoms in patients at 5 years and change between primary treatment and 5 years. Many symptoms were retrospectively reported to have increased during the 5 years and then decreased again up to 5 years. The retrospective figures were not seen reliable and were not used in the analyses of change.
The impact of prostate cancer on the relationship of the couple had become stronger. Fewer spouses reported that the prostate cancer had had no impact (either positive or negative) on the partnership (68% at diagnosis vs 57% during the follow-up), in 17% an impact had emerged and in 41% there was no impact in either measurement (Fisher’s exact test, p=0.1). In both measurements, more than 1 in 4 (28% vs 27%) reported that the partnership had improved. A deteriorating impact on the partnership was reported much more often (4% vs 16%).
A major impact on the spouses’ sex life was reported both during and at 5 years, and a strong impact had increased substantially (no impact at primary treatment 29% vs during/at 5 years 14/28%; little impact 25% vs 25/19%; moderate impact 24% vs 20/16%; strong impact 23% vs 42/37%).
Predictors of psychological recovery
Several factors assessed at primary treatment predicted the spouses’ psychological recovery (table 2). Prostatectomy as treatment, psychological responses ‘shock’ (p values 0.05) and ‘fear of death of the man’ and information received from many sources (the man/patient, a doctor, leaflets/handouts, TV/radio, internet, books; most p values ≤0.01) predicted better recovery (table 2, model 1), while older age, a large number of sources of information, and the man suffering from pain predicted poorer recovery (p values <0.01); the factors accounting together for 67% of the variance (R2) of the recovery scale. Thus, the stronger the psychological response to the diagnosis had been and the more often information from various sources was received at primary treatment, the better was the recovery at 5 years.
Predictors of the spouses’ psychological recovery at 5 years
After adding the follow-up experiences to the model (table 2, model 2), only the impacts of the psychological responses and information from the man/patient remained statistically significant, and poorer recovery was predicted also by information received from one’s relatives/friends at primary treatment (p=0.001). A better recovery was associated with the simultaneously measured social support from the children (p=0.001) and grief (p<0.01), and a poorer one with social support from the man/patient (p=0.01), depressed mood/feeling blue (p<0.05), worrying and the man’s/patient’s irritability/anger (p values ≤0.001).
Predictors of well-being at 5 years
Slightly different initial and follow-up factors were associated with the well-being measures (tables 3A,B and 4A,B). Poorer well-being was strongly connected with negative psychological symptoms and emotional changes, such as depression, irritability, difficulties in concentrating and depressed mood/feeling blue. The QOL domains were more positive if the spouse had no chronic diseases. Also, hormonal therapy, bowel dysfunction and irritability/anger in patients had a decreasing impact on well-being/QOL in spouses. Factors measured at the primary treatment accounted for 53%–65% of the variance (R2) of the 5-year well-being scores. A better well-being was also associated with follow-up experiences such as information from leaflets/handouts, TV/radio and internet; social support from the children; and relief of the patients’ side effects, especially pain. Social support from patient organisations was associated with less depression but poorer QOL. All the well-being measures were decreased by the patients’ cancer and treatment-related symptoms in the follow-up. Unexpectedly, grief at 5 years was associated with a better QOL.
Predictors of depression in spouses at 5 years
Predictors of the spouses’ physical health and psychological health at 5 years
Depression was operationalised in two ways. When the scale was divided into no/yes (cut-off point <9/≥9 for possible clinical depression37; in 22.4%), non-depression was predicted by the early factors ‘relief that cause for symptoms discovered’, worrying and the man’s/patient’s support, whereas information from relatives/friends and the patient’s bowel dysfunction predicted depression (table 3A). However, when modelling the level of depressive symptoms, increased depressive symptoms were predicted by ‘fear of the man being handicapped’ (p=0.001), information from relatives/friends (p=0.003), anxiety (p=0.001) and the patient’s bowel dysfunction (p=0.01), while worrying predicted reduced depressive symptoms (p=0.04); R2 0.451, data not shown.
When the follow-up experiences were added to the model (table 3B), worrying and information from relatives/friends were not statistically significant anymore, whereas increased depressive symptoms were predicted by hormonal therapy (p<0.001), ‘fear of the man being handicapped’ (p=0.04), baseline depression (p=0.006), given social support to the man and the patient’s bowel dysfunction (p values ≤0.05), and early social support from the children (p=0.004) predicted reduced depression. The follow-up factors anxiety, the spouses’ and the patients’ irritability and the patients’ sweating/hot flushes were associated with more depressive symptoms (p values <0.01 to <0.001). Social support from patient organisations was associated with a lower level of depressive symptoms (p=0.004).
Higher Overall QOL and General Health index was associated with the follow-up factors information received from leaflets/handouts and TV/radio (p values <0.01), and a lower one with a new chronic disease (p<0.05), a deteriorated financial situation, social support received from patient organisations (p values <0.01) and depressed mood (p<0.001); R2 for the final model 0.730 (data not shown).
Physical health was positively predicted only by lack of chronic diseases, but it was negatively predicted by initial difficulties in concentrating and emotional changes—but also social support given by the spouse to the man/patient at primary treatment (p<0.001), and the man/patient’s hormonal therapy (table 4A, models 1 and 2). Poorer physical health was associated with the man’s new chronic disease (p<0.05), the spouse’s own depression, support received from patient organisation and the patient’s bowel dysfunction (p values <0.01) (table 4A, model 2), and a better physical health with information received from TV/radio (p<0.05) and internet (p<0.01), current grief (p<0.001) and relief of the patient’s pain (p<0.01).
Psychological health was predicted by longer duration of the partnership (p<0.05), and having no chronic diseases, more tension (p values <0.01), and a larger number of sources of social support at primary treatment (p<0.05), whereas poorer psychological health was predicted by earlier depression and difficulties concentrating (p values <0.05) and the patient’s hormonal therapy (p=0.001) (table 4B, model 1). The follow-up experiences information from leaflets/handouts and TV/radio (p values <0.01) and social support from the children (p=0.001) were associated with better psychological health (table 4B, model 2). Poorer psychological health was associated with having diagnosed with new chronic disease(s), support from patient organisations, grief during the follow-up (p values <0.05), more worrying (p<0.01) and depression (p<0.001), and patient’s bowel dysfunction (p<0.001).
Discussion
In a 5-year follow-up survey of spouses of patients with prostate cancer, we explored their prostate cancer-related experiences, evaluated their psychological recovery and measured their well-being/QOL at 5 years. The predictors of recovery and well-being were investigated. Generally, the outcomes were inversely associated with depression-related negative psychological symptoms and emotional changes—whether reported at primary treatment or at follow-up. These findings probably reflect a personality-related response in a stressful situation, which had emerged in facing the prostate cancer. Certain experiences at primary treatment predicted the outcomes, also when the personality-related psychological factors were controlled for. This included prostate cancer-related information received from several sources (leaflets/handouts, TV/radio, internet) predicting favourable outcomes and the prostate cancer and treatment-related symptoms in men/patients predicting unfavourable outcomes.
A strength of this study is its longitudinal design, valid follow-up information and the measurement of well-being/QOL with validated scales. The participation rate was good. Factors measured at the time of primary treatment accounted for two-thirds of the total variance of the recovery score and nearly half or more of the well-being scores, indicating that the topics measured were important. We are not aware of a previous corresponding study. A limitation was the relatively small number of spouses studied and that majority of patients were treated with prostatectomy hampering comparison between different prostate cancer treatments. The follow-up was relatively long, but it comprised one measurement only. Although some information was asked retrospectively, we do not have information on the true course of the factors over the whole follow-up. However, the data provide valid information on the predictors of 5-year recovery and well-being of spouses of patients with prostate cancer.
In majority of the spouses, psychological symptom distress had alleviated and emotional changes due to prostate cancer had decreased. However, the changes fluctuating mood, anger and grief were as common as at primary treatment, suggesting a permanent emotional impact of prostate cancer. Unfortunately, a considerable and increased negative impact on the couple’s relationship and sex life was found. Much cancer and treatment-related symptoms were still reported, and for example, bowel dysfunction had increased. Pain, irritability/anger and bowel dysfunction in patients predicted poorer psychological recovery and well-being in spouses. Thus, concern caused by the partner’s suffering at primary treatment seems to be a long-lasting psychological burden for the spouse. The patients’ bowel dysfunction has also earlier been found to be associated with the spouses’ distress.18 Understandably, the patients’ irritability and bowel dysfunction (diarrhoea, bleeding) were associated with poorer well-being in their spouses living with them in the same home. In patients with prostatectomy and consequent short-term side effects of the surgery, distress of the spouses may have been higher at baseline and thus recovery (change in distress) was better. Furthermore, patients’ hormonal therapy, which was the only ongoing therapy, and which has the well-known adverse impacts (loss of libido/erectile dysfunction, hot flashes, fatigue11), had a decreasing impact on QOL in spouses. The patient being ill and unwell associated with the spouse’s QOL. The spouses were on average 65 years old and thus shared the developmental tasks due to ageing,39 such as retirement and increasing morbidity, and the stressors due to the man’s prostate cancer were added to these.20
The most important information sources were still the man and leaflets/handouts (by over 80%). The results in an earlier US study at 12 months post dg40 found partly similar proportions of information sources, but in our study the traditional media (newspaper/magazine, television/radio) prevailed (the previous study 49%/our results 87%) over relatives and friends (81%/45%); while internet (66%/64%) and books (56%/54%) were equally common. A significant finding was that information received early was an important predictor of a better recovery. The favourable information sources were the man, the doctor, leaflets/handouts, TV/radio, internet and books. However, early information from relatives/friends had an opposite, that is, non-favourable effect, probably because such information may be emotionally charged, distressing and even false, although found to be very common.40 As larger number of information sources predicted a poorer recovery, we suggest that having very many information sources at an early phase of a spouse’s cancer may be confusing, and thus lead to a poorer psychological outcome.24 The association between information received during the follow-up from leaflets/handouts, TV/radio and internet and a better well-being may be bidirectional, because the factors were assessed simultaneously; perhaps the better off spouses were able to seek and receive more information.
Social support from one’s adult children enhanced the spouses’ capability to recover psychologically and decreased depression. However, mutual social support between the spouse and the patient is a complicated issue, indicating complex social support processes in intimate partners. Although early social support from the man predicted better recovery and less depression, we also found that the spouses’ given support to the man predicted depressive symptoms and a poorer physical health 5 years later. Supporting the man at primary treatment may be a burden for the spouse, possibly by taxing her forces and reducing the care of her own well-being. This seemed to have had a long-lasting deteriorating impact on the spouses’ well-being. The social support received from the man in the follow-up associating with a poorer recovery was most probably due to that the spouses high in psychological distress were supported by the man. The association between support from patient organisations and poorer QOL is likely to indicate that the spouses suffering from more ill-being had turned to patient organisations for help,41 since support from patient organisations decreased depressive symptoms.
As people with cancer typically experience distress,42 including normal fears, worrying and sadness, we suggest that the observed impact of shock and fear at diagnosis on better recovery may reflect their adaptive nature in facing a potentially life-threating illness. The same responses were associated with increased distress at primary treatment.24 Also, the impact of worrying at primary treatment (felt by 97% and felt much by 61%; a common feeling in stressful situations) on reduced depression—and by contrast a negative association when present in the follow-up, probably indicates that worrying is non-favourable only at later time. From a clinical perspective, it may be important to bear in mind that a shock, fear and worry at a partner’s prostate cancer diagnosis and primary treatment may be an adaptive response. However, after the early phase these may be non-adaptive. Also, because grief at 5 years was associated with better recovery and physical QOL, it may be an adaptive emotion after years of prostate cancer diagnosis.
Early information on prostate cancer and its treatment enhanced the spouses’ ability to recover psychologically. Our findings point to the need of clinical attention on the information needs of spouses/partners of patients with prostate cancer in primary cancer treatment. It is likely that the information received by the spouses can be enhanced by improved communication between healthcare personnel and the spouses/partners, and by recommending to them trustworthy sources of information (in this data, leaflets/handouts, TV/radio and internet). Also, careful clinical management of the adverse impacts of prostate cancer treatment in the patients is extremely important as shown by the impact of the patient’s pain, irritability/anger and bowel dysfunction on the spouses’ recovery and long-term well-being. The results suggest that symptom management and psychological care for patients with prostate cancer need enhanced attention to also improve the spouses’ well-being. The well-being of spouses/partners of patients with prostrate cancer is strongly and often permanently adversely impacted by prostate cancer and its treatment. However, good comprehensive care for the patients and spouses/partners is likely to enhance the well-being of the partners of men with prostate cancer.
Data availability statement
Data are available upon reasonable request. Data supporting the findings of this study are available within the article and from the corresponding author upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved. The Ethical Committee of Tampere University Hospital approved the research protocol (2015/R15083). Participants received an information sheet and signed an informed consent form.
Acknowledgments
We thank specialist nurse, RN Jaana Saarinen whose work was irreplaceable also when collecting the follow-up data, MS Annamari Sveen for recording the questionnaire data in electronic form, and PhD, adjunct Professor Tommi Härkänen for his assistance in the statistical analyses.
References
Footnotes
Contributors U-SL and AA contributed to the study conception and design. U-SL and TT contributed to data collection. U-SL did the statistical analysis and contributed together with AA to data analysis and interpretation. All authors reviewed the paper for intellectual content, provided comments and gave final approval for publication. U-SL is responsible for the overall content, i.e., has full responsibility for the work and/or the conduct of the study, had access to the data, and controlled the decision to publish.
Funding This work was supported by the Cancer Foundation Finland (Syöpäsäätiö) and the Competitive State Research Financing of the Expert Responsibility Area of Tampere University Hospital.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.