Accepted: 15 May 2017 DOI: 10.1111/ecc.12729
ORIGINAL ARTICLE
Experiences and psychological distress of spouses of prostate cancer patients at time of diagnosis and primary treatment Ulla-Sisko Lehto PhD, Senior Researcher1
| Arpo Aromaa MD, PhD, Professor (emer.)1 |
Teuvo L. Tammela MD, PhD, Professor of Surgery, Chairman2,3 1 Health Monitoring Unit, National Institute for Health and Welfare THL, Helsinki, Finland 2 Department of Surgery, Tampere University Hospital, Tampere, Finland 3
We studied experiences and psychological distress of partners of prostate cancer patients at the time of diagnosis and primary treatment and investigated associates of their psychological wellbeing and the emotional social support they give to and receive
School of Medicine, University of Tampere, Tampere, Finland
from the patient. Using a quantitative questionnaire we studied the spouses’ experi-
Correspondence Ulla-Sisko Lehto, Health Monitoring Unit, National Institute for Health and Welfare THL, Helsinki, Finland. Email:
[email protected]
diagnosis; impacts of prostate cancer on partnership and sex life; impact of side effects
Funding information This study benefitted from financial support of Finland’s Slot Machine Association RAY via the project ‛Psychosocial rehabilitation of men with prostate cancer diagnosis’ by Eturauhassyöpäpotilaiden tuki ry ERSY. It was financially supported by the Medical Research Fund of Tampere University Hospital (legacy of Elna Kaarina Savolainen) and the Finnish Cancer Foundation
ences (psychological response and sources of information and emotional support at of treatment) and the emotional support given and received, and measured their psychological symptom distress. Many spouses reported distressing experiences and all psychological symptoms. Two thirds perceived no impact of the cancer on the partnership while 29% no change in sex life. Distress was associated with a shock, fear of the man’s death and impact of side effects, whereas emotional support from a doctor predicted less distress. More support given to the patient was associated with information and emotional support received from a doctor and the patient’s sexual dysfunction and pain, and less with experiences of depression, no impact on the partnership and the patient’s irritableness. The spouses’ distress was relieved by emotional support from a doctor, which along with received information also enhanced their capability to support the patient. KEYWORDS
Prostate cancer, Psychological distress, Psychological response, Quality of life, Social support, Spouses/Partners
1 | INTRODUCTION
et al., 2015; Lehto, Tenhola, Taari, & Aromaa, 2017; Miller et al., 2005; Pardo et al., 2010; Penson, Mclerran, et al., 2008; Roth, Weinberger,
Prostate cancer is the most common cancer in men in developed coun-
& Nelson, 2008; Sanda et al., 2008; Smith et al., 2009; van den Bergh
tries, and there were 420,000 new cases in Europe in 2012 (http://
et al., 2009) which comprise both transitory side effects and long-
globocan.iarc.fr). The number of patients is increasing worldwide, in
lasting adverse impacts, and especially urinary, sexual and bowel
part due to the ageing populations and in part due to wide-spread
dysfunction. These impair the patients’ quality of life, including sex
PSA testing (Schröder et al., 2014; van Leeuwen et al., 2013) (www.
life, social life and psychological wellbeing (Armes et al., 2009; Lehto,
cancerregistry.fi). Most patients are diagnosed at an early stage, and
Helander, et al., 2015; Miller et al., 2005; Pardo et al., 2010; Penson,
the prognosis is usually good (Penson, Rossignol et al., 2008; Schröder
Mclerran, et al., 2008; Penson, Rossignol, et al., 2008; Roth et al.,
et al., 2014; van Leeuwen et al., 2013; Wever et al., 2013). Thus, many
2008; Sanda et al., 2008; Smith et al., 2007, 2009), and often reduce
more men live for many years after the treatment. While survival is
quality of life also in the patients’ partners and spouses (Couper et al.,
good, the quality-of-life outcomes are impaired by negative effects
2006; Eton, Lepore, & Helgeson, 2005; Green, Wells, & Laakso, 2011;
of the treatments (Frank, Pisters, Davis, Lee, & Basset, 2007; Gavin
Northhouse et al., 2007; Resendes & Mccorkle, 2006).
Eur J Cancer Care. 2018;27:e12729. https://doi.org/10.1111/ecc.12729
wileyonlinelibrary.com/journal/ecc
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The psychosocial responses of patients and their partners to pros-
prostate cancer patients, and to identify those important for wellbeing
tate cancer seem to be similar (Green et al., 2011; Northhouse et al.,
and quality of life. Research on the factors threatening the partners’
2007). The spouses may confront distressing uncertainties and de-
wellbeing is needed in order to understand how to take these into ac-
mands, including the threat of losing the husband (Eton et al., 2005;
count; a better wellbeing of the spouse is likely to enhance the wellbe-
Green et al., 2011; Northhouse et al., 2007). Often the spouse shares
ing of the patient (Kamen et al., 2015; Northhouse et al., 2007). Each
the experiences and the psychological distress of the patient. The
partner also affects the wellbeing of the other (Kershaw et al., 2008).
partner may also take part in the selection of the treatment among
Interventions for partner wellbeing have been found to be most effec-
sometimes diverse treatment options and accompany the patient to
tive when they target reduction in emotional distress and improved
the outpatient clinic visits. The prostate cancer and adverse impacts of
communication (Wootten, Abbott, Farrell, Austin, & Klein, 2014).
the treatment may jeopardize the intimate life of a couple, which may
The aims of this study were to investigate distress of partners of
impair the spouse’s quality of life. Women have been found to report
prostate cancer patients at the time of diagnosis and primary treat-
more cancer distress than men regardless of whether they are the pa-
ment by exploring various cancer-related experiences and psycholog-
tient or the partner (Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne,
ical reactions of partners of prostate cancer patients with quantitative
2008), and the couples may even react as an emotional system or unit
methods, and measuring their psychological symptom distress at the
rather than as individuals (Traa, de Vries, Bodenmann, & Den Oudsten,
survey. We explored especially the partners’ experiences at and re-
2015). The partners suffer negative changes in psychological wellbe-
sponse to the diagnosis, and changes due to the cancer diagnosis and
ing and may even report more cancer-specific distress than the pa-
treatment side effects on their lives. A corresponding survey with a
tients (Couper et al., 2006; Eton et al., 2005; Northhouse et al., 2007;
similar questionnaire has been previously conducted to prostate can-
Resendes & Mccorkle, 2006), although many believe that patients are
cer patients (Lehto, Helander, et al., 2015) and we aimed to compare
the more distressed. Prostate cancer impacts also the patient’s sup-
answers of the partners to those of the patients. We investigated
port system and the spouse is an important source of social support
which experiences and responses have impact on the psychological
for the patient (Kamen et al., 2015). The patient may also support the
symptom distress and on the emotional social support the spouses
spouse.
give to and receive from the patient. The objective was to identify the
In most countries the average age at prostate cancer diagnosis is over 70 years (Penson, Rossignol, et al., 2008) (www.cancerregistry.fi).
factors of importance for the psychological wellbeing of the spouses and couples.
Stressors related to the prostate cancer diagnosis add to the developmental tasks specific to the patients’ ageing. Partners of prostate cancer patients are mostly elderly and the partnership has lasted for decades. The ageing couples share the demands and developmental tasks of their age (Harden, 2005), including chronic diseases and retire-
2 | SUBJECTS AND METHODS 2.1 | Participants
ment. After the prostate cancer diagnosis, the disease and treatment-
Consecutive newly diagnosed prostate cancer patients (n = 1611)
related stressors are added to these (Green et al., 2011).
attending the Urology Outpatient Clinic of Tampere University
Research on quality of life of prostate cancer patients (Frank et al.,
Hospital during March 2010–June 2011 were asked for a written
2007; Miller et al., 2005; Milne, Spiers, & Moore, 2008; Pardo et al.,
permission to approach their partner (spouse, partner and girlfriend)
2010; Smith et al., 2009; Yu Ko & Degner, 2008) has been comple-
to participate in a mail survey 2−7 months after diagnosis. Patients
mented by research on the wellbeing of spouses and couples (Couper
giving permission (n = 120 patients, 75% of those approached; 8%
et al., 2006; Docherty, Brothwell, & Symons, 2007; Eton et al., 2005;
had no spouse or partner) were asked to provide the partner’s con-
Green et al., 2011; Hagedoorn et al., 2008; Harden, 2005; Lehto,
tact information. The study questionnaire and an informed consent
Saarinen, et al., 2015; Northhouse et al., 2007; Resendes & Mccorkle,
form were mailed to the partners from the urological department 2
2006; Sanders, Pedro, Bantum, & Galbraith, 2006; Zeliadt et al., 2011),
months after diagnosis or later to ensure that the most acute cancer
and nowadays there is a growing literature that examines wellbeing
crisis was over and experiences on the treatment had been accumu-
of the spouses and couples according to theoretical frameworks (e.g.
lated. One hundred and eight partners (90% of those with a permis-
coping) and also the dyadic factors in the couples (Kershaw et al.,
sion of the patient) returned a completed questionnaire. Two patients
2008; Lafaye et al., 2014; Lim, Shon, Paek, & Daly, 2014; Regan et al.,
had a previous prostate cancer diagnosis and these responses were
2014; Traa et al., 2015). There is diversity in the concepts measured
excluded; 106 questionnaires were accepted. The patients not agree-
across studies, including conception and measurement of distress. The
ing, or those who had no partner, were slightly older (mean age 64.9,
National Comprehensive Cancer Network (NCCN) has defined the
SD 8.8) than the participants (mean age 61.7, SD 7.6).
term ‛distress’ as psychological, social and spiritual aspects of cancer care (Holland & Bultz, 2007). People with cancer normally experience some level of distress, but it can reach intolerable levels. Distress can range from normal fears, worry and sadness to disabling problems.
2.2 | Questionnaire The questionnaire was designed for the purposes of the study
Quantitative assessments are needed to evaluate occurrence of
in collaboration with the prostate cancer patient organiza-
unpleasant experiences and psychological responses of the spouses of
tion Eturauhassyöpäpotilaiden tuki ry ERSY. It was developed
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simultaneously with the questionnaire of a nationwide survey for prostate cancer patients (Lehto, Helander, & Aromaa, 2010; Lehto,
3.1 | Psychological symptom distress
Helander, et al., 2015; Lehto et al., 2017) and the two question-
All respondents reported at least one psychological symptom in the
naires share many questions. Members of the ERSY support group for
RSCL (mean 9.7, SD 5.8). The most common symptoms were worrying
spouses participated in pilot studies.
(93%), tension (77%) and desperate feelings about the future (72%)
The questions inquired about (1) experiences at and response to
(Table 2). Spouses aged ≥70, those having a university education and
the diagnosis: how the partner learned of the diagnosis, psychological
the retired had less distress, whereas spouses aged
