Suffering in Silence: Loneliness Among Men with Prostate Cancer and the Potential for Exercise as a Connection

Abstract

Men with prostate cancer may experience cancer-related loneliness that impacts their mental and physical health, yet there is little research in this area nor on intervention strategies. We explored the relationship between cancer-related loneliness, anxiety, depressive symptoms, social and physical functioning and the potential benefits of group exercise in a subset of men with prostate cancer participating in a clinical exercise trial. We added the Cancer Loneliness Scale questionnaire to measures of anxiety (PROMIS), depressive symptoms (CES-D) and social and physical function (QLQC30 subscales) mid-way through the GET FIT Prostate trial (NCT03741335). 145 men (mean age: 71.2 +/− 7.3 yrs) completed measures prior to participating in one of three online supervised group exercise programs for 6 months with a 6-month follow-up post-intervention. While exercise modalities differed among the three groups, all men participated in 15 minutes of semi-structured social time immediately prior to the start of their one-hour exercise class. 70% of men reported some level of cancer-related loneliness at baseline. Cancer-related loneliness was significantly (p<0.01) and positively associated with higher anxiety (r=0.61) and worse depressive symptoms (r=0.66) and inversely with social (−0.50) and physical (−0.23) functioning. After 6 months of group exercise, cancer-related loneliness decreased among men who reported experiencing loneliness at least some of the time at baseline (p=0.001). Cancer loneliness began to rise again over the 6-month follow-up period but remained below baseline levels. A majority of men with prostate cancer may experience cancer-related loneliness, but socially-enhanced group exercise could be an effective countermeasure to improve well-being.

Prostate cancer can make men feel socially isolated, even from friends and family, leading to feelings of loneliness that negatively impact their health and quality of life. Group-based exercise shows promise in addressing the social, emotional, and physical needs of men with prostate cancer.

Introduction

Loneliness is considered an innate evolutionary warning signal that is similar to hunger or pain [1] and is a worldwide public health problem [2]. Various aspects of the cancer experience can create unique feelings of loneliness [3] and loneliness in people with cancer is linked to poor mental and physical health [4–9]. Men with prostate cancer may be at particular risk of social isolation and loneliness because they are often reluctant to engage in psychosocial oncology care, including support groups, for reasons such as stigma, stoicism, autonomous coping, not wanting to burden others, unwanted sympathy, and retaining privacy [10]. Men are also less likely to have trusted individuals to confide in about their worries and fears, may choose not to confide in a partner, or may receive negative support from friends and family, all of which are factors related to poor pyschosocial and overall wellbeing [11,12].

Social support is widely acknowledged as a protective factor in ameliorating the psychological burden associated with prostate cancer [13]. However, no controlled trial of interventions to reduce loneliness in men with prostate cancer has ever been conducted, leaving the social and emotional needs of these men largely unaddressed. For people without cancer, exercise-based strategies that integrated activities to enhance social engagement among participants have been effective in reducing social isolation [14]. Exercise avoids the stigma that men may feel about mental health services. Group exercise could simultaneously alleviate social isolation and loneliness while increasing physical health, functioning, and independence. We conducted an ancillary study in the GET FIT Prostate clinical exercise trial to begin to explore the relationship between cancer-related loneliness, anxiety, depressive symptoms, social and physical functioning, and potential benefits of group exercise in a subset of men with prostate cancer.

Methods

The GET FIT Prostate trial (NCT03741335) was a randomized controlled trial comparing two types of exercise program for fall prevention to a placebo exercise condition among men with prostate cancer exposed to at least 6 mo of androgen deprivation therapy (ADT) in the previous 10 yr [15]. All participants were randomized to a supervised group exercise program (up to 12 participants per group) that met online three times per week for 6 mo. All classes were held on the Zoom virtual platform and men participated in 15 min of semistructured social time before the start of every exercise session. For the first 8 wk, the exercise instructor introduced topics for conversation, but for the remaining 16 wk the instructor opened the Zoom room but turned their camera and sound off to provide the men with a private space for discussion. Approximately midway through the trial, we added a questionnaire on cancer loneliness to the planned assessments collected at baseline, midway through the intervention (3 mo), after the intervention (6 mo), and 6-mo follow-up (12 mo). Assessments included measures of anxiety, depressive symptoms, and social and physical function. The seven-item Cancer Loneliness Scale (CLS) measures cancer loneliness by asking how often an individual experiences a feeling of loneliness specific to having cancer, such as “how often do you feel others cannot provide the support your need to deal with your cancer?”, ranked on a Likert scale from 1 (never) to 5 (always). Higher scores indicate greater feelings of cancer loneliness [8].

We conducted an ancillary analysis for the subsample of men who completed the CLS at baseline (n = 145). We calculated the prevalence of cancer loneliness as the percentage of men reporting CLS scores >1, indicating they experienced some level of cancer-related loneliness, and determined the association of cancer loneliness with baseline demographics, clinical characteristics, and self-reported physical and mental health using Pearson’s correlation. We used a piecewise mixed-effects model to estimate changes in cancer loneliness from baseline over the course of the 6-mo exercise program and from the end of the program to 6-mo follow-up, using all available observations for the subsample (k = 356 observations). Since all of the study groups received the same pre-exercise social time, we grouped men in the different exercise programs together.

Results

The men who completed the CLS at baseline had a mean age of 71.2 yr (standard deviation [SD] 7.3); most were White (92%) and married (87%), with nearly half (42%) living in rural areas. The mean time since their cancer diagnosis was 5 yr, and the majority were on ADT at the time of the study (72%). More than half of the men had metastatic disease (54%) and a moderate level of comorbidity (mean Charleson comorbidity index 3.9, SD 2.8). At baseline, 70% reported some level of cancer loneliness (CLS score >1); the mean CLS score was 1.8 (SD 1.4). Cancer loneliness was inversely associated with age (r = −0.30; p < 0.001) and positively associated with comorbidity (r = 0.36; p < 0.001) and was significantly greater among men with metastatic disease compared to those with nonmetastatic prostate cancer (p < 0.001). Loneliness was not associated with marital status, rural residence, time since diagnosis, or current versus past ADT use (all p > 0.05). Cancer loneliness was positively associated with higher anxiety (r = 0.61) and worse depressive symptoms (r = 0.66), and was inversely associated with social (r = −0.50) and physical (r = −0.23) functioning (all p < 0.01).

There was a significant interaction between the degree of change in cancer loneliness over the 6-mo exercise period and baseline loneliness: the decrease in loneliness was greater for men with a higher level of loneliness at enrollment (p =0.001; Fig. 1). During the follow-up period, loneliness began to increase again but remained below the baseline value among men reporting a CLS score >1 at enrollment (Fig. 1). The rate of increase in cancer loneliness was independent of baseline loneliness (p = 0.17).

Fig. 1 – Estimated change in cancer loneliness from baseline over a 6-mo group exercise and further 6-mo follow-up for baseline scores of 1, 2, 3, and 4.

Discussion

We found that in a subsample of men with prostate cancer in our clinical trial of exercise for fall prevention, 70% reported having at least some level of cancer loneliness. Men with prostate cancer have reported feeling stigma, shame, and embarrassment due to changes in their perceived body image and physical function, which in turn can cause men to feel alone, unsupported, and more apt to isolate themselves socially from friends and family [11]. Men with prostate cancer also express relational difficulties due to feelings of anger that further isolate them from support networks, which also leads to feelings of loneliness [16]. These different ways of coping with prostate cancer may explain why such a large proportion of men in our study reported feelings of cancer loneliness even though 87% of the participants were married. Even caregivers of individuals with cancer may experience social isolation from caregiving, leading to feelings of loneliness [17]. Men with poorer health and more advanced disease also experienced greater feelings of loneliness, which might be because of illness-related constraints on access to social networks and existential threats. Older age is also associated with a greater risk of loneliness due to shrinking social networks [18], although age was inversely associated with loneliness, possibly because of greater feelings of the existential threat of cancer.

Higher levels of loneliness among men in our study were associated with poor emotional, social, and physical functioning. For individuals with cancer, social isolation and loneliness can adversely impact emotional wellbeing and are associated with higher levels of systemic inflammation and poorer immune functioning, fatigue, pain, sleep disturbance, anxiety and depressive symptoms, suicidal ideation [15], and all-cause mortality [8,9,19,20]. Among men with prostate cancer, rates reported for clinical depression, anxiety, and thoughts of suicide/self-harm are 17–34%, 17–23%, and 10–19%, respectively [21], which are greater than in the general adult population [22,23]. The potential physical and mental health consequences of social isolation and loneliness highlight the urgency of addressing this silent problem in men with prostate cancer.

A 6-mo group exercise program that included a short social period before each session alleviated feelings of loneliness in men who reported more loneliness to begin with. Loneliness began to increase again after the exercise program ended, although not entirely, suggesting some lasting benefit, perhaps because of sustained social connections. There is a paucity of interventions aimed at reducing social isolation and loneliness for individuals with cancer, and none that simultaneously addresses physical health [24]. Most studies have consisted of an education or psychosocial intervention that includes group-based peer social support or provider support from a nurse or social worker. However, men with prostate cancer do not typically engage in the traditional psychosocial support and may need more gender-tailored care [11,25]. Exercise avoids the stigma that men may feel about mental health services, and addition of a social component to group-based training could simultaneously alleviate social isolation, loneliness, and emotional suffering while increasing physical health, functioning, and independence. Our exploratory findings for a subsample of men in the GET FIT Prostate trial suggest that simple addition of a social component to group exercise warrants further investigation. In fact, as loneliness affects the physical and mental health of caregivers too, they could also benefit from socially enhanced exercise, which might even provide a mechanism for positive engagement between patients and caregivers.

In conclusion, there needs to be greater awareness that cancer can make men feel socially isolated, even from friends and family, leading to feelings of loneliness that negatively impact their health and quality of life. There is an urgent requirement to address this unmet need. Group-based exercise shows promising potential for addressing the social, emotional, and physical needs of this at-risk population.