Evaluating psychological support services available for men living with prostate cancer and their carers and families across England

Article (Comment) extract: British Journal of Urology International, September 2019

Frank Chinegwundoh & Roshani Perera

DOI: 10.1111/bju.14959

“To date there is no national view of what level of psychological services are being offered to men living with prostate cancer and their families and carers across England. In line with the Freedom of Information (FOI) Act (2000), Tackle (The National Federation of Prostate Support Groups) sought to understand what specific psychological support is on offer to men living with prostate cancer through hospital Trusts across England.

The results showed that out of the 118 hospital Trusts that responded, only 28% had a record of the number of men living with prostate cancer being offered and referred to psychological support services. Furthermore, just 36% of Trusts reported offering psychological support services to the majority (<90%) of men living with the disease, a mere three Trusts referred all men living with prostate cancer to a psychological support service when offered, and seven said they did not routinely offer or have access to such services.

One of the most alarming findings was that although most men (93%) living with prostate cancer beyond active treatment have access to psychological support services, the scope of services offered varied widely, ranging from the highest level of psychological support to provision of a Macmillan psychological support booklet.

Looking beyond the UK, in September 2019, the Prostate Cancer Foundation in Australia introduced a new Psychosocial Model of Care for Men with Prostate Cancer, recommending that after the diagnosis of prostate cancer and regularly through treatment and surveillance, men should be screened for distress and their psychological and quality of life concerns should be explored. It is also important to consider sexual recovery after prostate cancer treatment for both patients and partners in relation to functional, emotional, and relationship domains. Our present findings show that the NHS is moving to a point where it over-relies on charities providing psychological support services and concerns are being raised by the charitable sector about the sustainability of this model. Most of the services offered by charitable organisations are volunteer-led or supported through their national/local fundraising efforts. For these services to be sustainable and fit for purpose there needs to be a national framework in line with clinical guidelines and underpinned with Government funding, so that there is a more consistent and equitable approach to providing psychological support for men with prostate cancer across England.”

Optimizing psychosocial support in prostate cancer patients during active surveillance

Article summary: International Journal of Urological Nursing, July 2020

Kim Donachie, Erik Cornel, Marian Adriaansen, Rosa Mennes, Inge van Oort, Esther Bakker, Lilian Lechner

DOI: 10.1111/ijun.12242

“Active surveillance is a conservative treatment approach that involves close monitoring of prostate cancer. During surveillance patients do not undergo active treatment but remain under close surveillance. Active surveillance has the potential to minimize treatment-related toxicity and complications and reduce health care costs without compromising survival. This has resulted in an increased active surveillance adoption in the United States, Australia and Europe during the last decade.

Although psychosocial support plays an important role during active surveillance, follow-up visits often focus on physical well-being and early detection of disease progression. Nurses often adopt a more holistic view of care by addressing physical, psychosocial and emotional well-being. However, they are not always involved during active surveillance follow up. If provided with the time and opportunity, nurses are well suited to deliver acceptable, accessible and cost-effective psychosocial support during active surveillance. Nurse-led psychosocial support might be a feasible intervention to reduce anxiety and uncertainty and improving adherence.

This research used a qualitative research design to conduct 17 semi-structured interview to acquire new insights on patient perspectives regarding this sensitive topic. Results of the study provided an insight in the psychosocial support needs of active surveillance patients during various stages. It emphasized the importance of providing reliable, relevant information to the patients on disease characteristics and mortality risk, immediately after diagnosis. A positive patient-caregiver relationship seemed to play an important role in active surveillance adoption during the first months.

This study recommends that transparent, unbiased, proactive information on treatment options and procedures is provided consistently, and that information is adjusted to health literacy level and socio-economic status. The use of an enclosed website or digital application to access this information is recommended. According to the participants in the study, this website or digital application should also facilitate PSA self-monitoring and contact with caregivers and peers.

Regular assessment of coping strategies might be crucial in the detection of ineffective coping strategies. Upon the detection of ineffective coping strategies, psychoeducation should promote adoption of effective coping strategies and disease acceptation. Since anxiety is most present during the first year, comprehensive evaluation of active surveillance within this first year should reaffirm the patient’s preference. Further research should focus on the development of a psychosocial support program. This program should consist of evidence-based elements, based on the needs of the active surveillance population, designed in collaboration with experts and patients.”

Effectiveness of a couple-based psychosocial intervention on patients with prostate cancer and their partners: A quasi-experimental study

Article Abstract and comment: Journal of Advanced Nursing October 2020

Chien, CH, Chung, HJ, Liu, KL, Pang, ST et al.

DOI 10.1111/jan.14471

Note: This is an interesting study from Taiwan which explores a couples-based intervention specifically for men with recently diagnosed prostate cancer. They did not achieve a result for patients but did see significant improvements in partners.

Aim: To understand the effectiveness of a couple-based psychosocial information package (PIP) and multimedia psychosocial intervention (MPI) on patients with prostate cancer and their partners using a random assignment and quasi-experimental design.

From August 2015 to March 2018, 103 newly diagnosed patients with prostate cancer and their partners were divided into a control group (CG) (n = 50), PIP group (n = 25) and MPI group (n = 28). The CG received usual care, the PIP group received information manuals and telephone counselling for 6-week and the MPI group received multimedia films and manuals and professional support for 6 weeks. The three groups were posttested 6, 10, 18 and 24 weeks after the pre-test. The outcome measurements included disease appraisals, emotion status, relationship satisfaction, health-related quality of life (HRQOL) and satisfaction with MPI.

Results: Partners in the MPI and PIP groups experienced significant improvements in positive and negative affect or mental HRQOL as compared with the CG. The effectiveness of MPI and PIP on negative affect, mental HRQOL, however, were not statistically significant in patients with prostate cancer. Nevertheless, patients were satisfied with the MPI.

Conclusion and Impact: There is a lack of studies that focus on the effectiveness of couple-based psychosocial intervention on both the patients with prostate cancer and their partners in Asia. Partners in the multimedia psychosocial intervention group and psychosocial information package group experienced improvements in positive affect, negative affect or health-related quality of life as compared with the control group. Patients in both intervention groups experienced similar negative affect and health-related quality of life as compared with the control group. The couple-based psychosocial interventions can be provided by nurses based on partners’ preferences and available resources.

Distress Screening for Men with Prostate Cancer

Article Abstract and comment: Seminars in Oncology Nursing 36(4) 2020

Samantha Jakimowicz, Tracy Levett-Jones and Suzanne K. Chambers

DOI:10.1016/j.soncn.2020.151041

Note: This research refers to a trial of the Distress Screening for Prostate Cancer (DSPC) e-learning module currently available for free by the University of Technology Sydney. This course is highly recommended by the Prostate Cancer Foundation of Australia for healthcare professionals working with men diagnosed and treated for prostate cancer including, but not limited to, general practitioners, registered nurses (general and urology, oncology), prostate cancer specialist nurses, physiotherapists, exercise physiologists.

“Although screening for distress and referral to evidence-based psychosocial support is a well-endorsed standard of cancer care, the extent to which this standard has been implemented varies widely. Lack of awareness, knowledge and skills in screening for distress in this patient group are likely key barriers to psychosocial care provision. The objective therefore was to discuss the development, design and evaluation of the effectiveness of the Distress Screening for Prostate Cancer (DSPC) module in targeting the perceived challenges and barriers to distress screening and psychological care by healthcare professionals.

The DSPC module was piloted with five senior prostate cancer specialist nurses prior to the planned implementation with 50 prostate cancer nurses. Their average age was 49.8 years (range 43 to 57 years); there were three females and two males. Results from the Satisfaction with the Distress Screening Prostate Cancer E-Learning Module instrument indicated a high level of overall satisfaction with individual participants’ scores ranging from 83-125/125 (mean 108.2).

Conclusion: Distress screening is an essential component of prostate cancer care and based on the information collected from stakeholders an e-learning module was designed and developed as an interactive and engaging evidence-based, pedagogically sound educational platform. The preliminary results from piloting the e-learning module indicated a high level of learner satisfaction and a measurable improvement in pre-post knowledge acquisition scores. These results suggest that this approach has the potential to increase screening for distress in men with prostate cancer and lead to more timely referral to psychosocial and supportive care to improve men’s quality of life after diagnosis and over the illness trajectory.

Implications for Nursing Practice: Specialist nurses and other healthcare professionals play an important role in screening men with prostate cancer for distress. This newly designed educational resource supports nurses in their practice of screening men with prostate cancer and the appropriate referral process.”

The role of masculinities in psychological and emotional help seeking by men with prostate cancer

Journal article extract: Psycho-Oncology, 29, 2020

Belinda C. Goodwin, Nicholas Ralph, Michael J. Ireland, Melissa K. Hyde, John L. Oliffe, Jeff Dunn, Suzanne Chambers

DOI 10.1002//pon.5264

Prostate cancer is a significant global health concern with approximately 1.4 million men diagnosed with the disease worldwide each year. With advancements in prostate cancer treatment, the likelihood of living 10 years after diagnosis has improved and survival rates are now at 90.6% in Australia, 98% in the United States, and 84% in the United Kingdom. Nevertheless, increased survival does not necessarily translate to improved quality of life. Men can experience significant physical and psychological symptoms and declining health-related quality of life over time. In addition, men with prostate cancer report distress and uncertainty regarding their disease progression and prognosis leading to further psychological burden over time.

Almost one in two men diagnosed with prostate cancer report unmet psychological and psychosocial care needs and although many studies report the prevalence of psychological need in prostate cancer patients, few have identified the triggers or the frequency at which men seek support. In an Australian study (n = 76) of rural males living with cancer, younger men were found to be more likely to seek support from health professionals. The presence of anxiety, depression, and stress did not correspond with help-seeking behaviour. Actual levels of psychological and emotional distress may therefore be poor predictors of seeking support among men with cancer.

Gendered dimensions of men’s prostate cancer illness experiences such as masculinities may provide some insight into their help-seeking behaviours. Masculinities represent a framework of socially constructed gendered ideals to which men diversely align.

The current study investigated psychological and emotional help-seeking behaviour in men with prostate cancer several years posttreatment and found that only a minority of respondents who reported a need for such support actively sought it. Those who did seek support tended to be younger and sourced it largely from their GP or through prostate cancer support groups. Those with the highest degree of need for psychological support were less likely to seek this support if they were high in optimistic action, an alignment to masculine norms that reflects an orientation toward taking positive action in the face of challenges.

The importance of psychological and emotional well-being is increasingly being emphasized as part of survivorship care; yet at least 70% of respondents in the current study who required support failed to seek it within 12 months since baseline. This means a large proportion of prostate cancer survivors who are experiencing treatment do not seek help for emotional and psychological issues, and therefore, their needs remain unmet over time. The current study demonstrated that intention to seek support was only moderately associated with subsequently accessing care. With high unmet psychological and emotional needs persisting in men with prostate cancer over the last two decades different mechanisms may need to be introduced to target psychological help seeking in those men who espouse intent but tend to avoid it. Clinicians should be aware that men with chronic illness who appear to approach challenges with optimistic action may in fact be in need of psychological care but less likely to seek help and must therefore continue to prompt, facilitate, and follow-up with them regarding their efforts to seek appropriate support. To promote psychological help seeking in this at-risk subgroup, actively engaging help might be reframed and affirmed as strength-based positive actions to solving significant problems. Moreover, the benefits of improved well-being for men might be formally linked to aiding family and friends to appeal to men’s ideals about protecting others.

The Anxiety Depression Pathway Among Men Following a Prostate Cancer Diagnosis: Cross-Sectional Interactions Between Anger Responses and Loneliness

Journal Abstract: American Journal of Men’s Health May-June 2021

Simon M. Rice, David Kealy, John S. Ogrodniczuk, Zac E. Seidler, Gabriela Montaner, Suzanne Chambers, and John L. Oliffe

DOI: 10.1177/15579883211023699

“Anger has been a largely neglected emotion in prostate cancer research and intervention. This paper highlights the role of anger in the anxiety depression pathway among men with prostate cancer, and whether its impact is dependent on loneliness. Data are presented from a sample of men with prostate cancer (N = 105, M = 69.12 years, prostatectomy = 63.8%) and analysed using conditional process analysis. Dimensions of anger were evaluated as parallel mediators in bi-directional anxiety and depression pathways. Loneliness was evaluated as a conditional moderator of identified significant mediation relationships. Moderate severity depression (16.5%) was endorsed more frequently than moderate severity anxiety (8.6%, p = .008), with 19.1% of the sample reporting past two-week suicide ideation. Consistent with hypotheses, anger-related social interference (but not other dimensions of anger) significantly mediated the anxiety-depression pathway, but not the reverse depression-anxiety pathway. This indirect effect was conditional on men experiencing loneliness. Sensitivity analyses indicated the observed moderated mediation effect occurred for affective, but not somatic symptoms of depression. Findings support anger-related social interference (as opposed to anger frequency, intensity, duration or antagonism) as key to explaining the previously established anxiety-depression pathway. Results underscore the need for enhanced psychosocial supports for men with prostate cancer, with a particular focus on relational aspects. Supporting men with prostate cancer to adaptively process and manage their anger in ways that ameliorate negative social consequences will likely enhance their perceived social support quality, which may in turn better facilitate post-diagnosis recovery and emotional adjustment.”

Effects of social support, hope and resilience on depressive symptoms within 18 months after diagnosis of prostate cancer

Journal article summarised extract: Health and Quality of Life Outcomes, 2021

Xinxin Zhao, Ming Sun, and Ye Yang

DOI 10.1186/s12955-020-01660-1

“The aim of the present study was to assess the depression among prostate cancer patients in China as well as to explore the protective effects of social support, hope and resilience on depression within the first 18 months of diagnosis.

Regarded as positive psychological resources, hope and resilience have been proven to be beneficial in cancer patients. Hope might provide cancer patients positive coping strategies for depression, including sustaining the movement toward achieving a goal and providing the pathways of reaching the desired goals. Resilient patients might show more emotional stability when faced with adversity and obstacle caused by cancer. These findings prompted us to believe that both positive experiences regarding one’s own goal and route (hope) and positive adaptation in the context of traumatic events (resilience) were important to effectively ameliorate and even overcome depressive symptoms in prostate cancer patients.

Results from a total of 564 effective respondents indicated that while prostate cancer patients suffered from depressive symptoms (65.9%), perceived social support (especially support from family), hope and resilience can be positive resources for reducing depressive symptoms.

The present study indicated that more effort should be devoted to improve social support (especially family support), as well as to elevate hope and resilience in prostate cancer patients. Provision of social support to family of prostate cancer patients could be substantial in reducing depressive symptoms. Family members also should not give up providing reassurance and spending time with patients.

Besides the direct effect of perceived social support on depression, prostate cancer patients who perceive more social support, especially support from family, might be more likely to experience higher hope and resilience, which in turn reduced their depressive symptoms. Additionally, the indirect effect of resilience was larger than that of hope in the multiple mediators analysis, indicating the importance of patients’ capacity to maintain and recover psychological well-being in the face of cancer.”

Depression, anxiety, and suicidality in patients with prostate cancer: A systematic review and meta-analysis of observational studies

Journal article extract: Prostate Cancer and Prostatic Diseases Volume 24 2021

Oliver Brunckhorst, Safiya Hashemi, Anastasia Martin, Gincy George, Mieke Van Hemelrijck, Prokar Dasgupta, Robert Stewart & Kamran Ahmed

DOI 10.1038/s41391-020-00286-0

“Psychiatric implications of prostate cancer are increasingly recognised, having important effects on oncological and functional outcomes. However, findings for co-occurring depression, anxiety, and suicidality remain variable. Therefore, this review of observational studies aimed to establish best estimates of the prevalence and rates of these outcomes in prostate cancer patients.

A systematic literature search was conducted using MEDLINE, Scopus, PsycInfo, and Cochrane Library databases from inception up to 26 May 2020. The review sought to provide best estimates for depression, anxiety, and suicidality after a diagnosis of prostate cancer. Our identified prevalence of clinical diagnoses of depressive disorders were consistent with global estimates in the general population of 4.4%, particularly when considering estimates of 5.5% for males aged between 55 and 74. These results are also in keeping with estimates in a cancer specific population of between 4 and 11%. Significant depressive and anxiety symptoms were common in our analysis, with these figures also largely consistent with the high prevalences of these symptoms in cancer populations as a whole. Similarly, recent suicidal ideation was common; present in 9.85%, and considerably higher than 2% 1-year general population estimates. Subsequently, the suicide mortality rate seen was high, with our identified rate considerably higher than quoted rates in the United States of 16.7 and 31.4 per 100,000 person years for both general and cancer specific populations respectively. This remains the case even when considering the higher risk groups of elderly and male patients. These results therefore demonstrate the high psychiatric morbidity and mortality experienced by men post prostate cancer diagnosis.

The findings in this meta-analysis have important clinical implications. Increased awareness of the psychiatric impact of prostate cancer and is needed. We demonstrate this to be frequent, thereby requiring a central role during follow-up. Integration of psychosocial services into current pathways is vital for improving current care Psychiatric complications of prostate cancer are common. A high prevalence of depressive and anxiety symptoms is seen in this cohort. Additionally, recent suicidal ideation and suicide mortality are high when compared to general population estimates. This highlights the importance of integrating mental health care within urological and oncological follow-up. Regular screening of patients and at-risk groups is vital for early identification and treatment and should be evaluated for improving overall quality of life and functional outcomes in prostate cancer patients.”

New Challenges in Psycho‐Oncology Research III: A systematic review of psychological interventions for prostate cancer survivors and their partners: Clinical and research implications

Journal article extract: Psycho‐Oncology Volume 26 2017

Suzanne K. Chambers, Melissa K. Hyde, David P. Smith, Suzanne Hughes, Susan Yuill, Sam Egger, Dianne L. O’Connell, Kevin Stein, Mark Frydenberg, Gary Wittert, and Jeff Dunn

DOI 10.1002/pon.4431

“Psychosocial concerns are prevalent with 30%‐50% of prostate cancer survivors reporting unmet sexuality, psychological, and health system and information needs and 10%‐23% of men clinically distressed. Risk of suicide is increased after prostate cancer diagnosis and can persist for a decade or more. Psychosocial and psychosexual intervention can improve decision‐related distress, mental health, domain‐specific, and health‐related quality of life in men with prostate cancer. Combinations of educational, cognitive behavioural, communication, and peer support have been most commonly applied and found effective; followed by decision support and relaxation; and to a much lesser extent supportive counselling.

In this review, approximately one‐quarter of interventions reported effects moderated by sociodemographic or psychosocial variables; with age, educational level, domain‐specific quality of life, baseline mental health, and social support important considerations in designing care. Hence, as well as taking into account levels of distress, it is also important to consider factors that both moderate intervention effectiveness and place men at risk of greater psychosocial distress and poorer quality of life (such as age, domain‐specific quality of life, socioeconomic deprivation) over the longer term.

Survivorship care plans for prostate cancer patients will need to be stepped according to the type and depth of need. In conclusion, there is sufficient evidence to recommend multi‐modal psychosocial and psychosexual interventions for men with prostate cancer; with distress screening and risk and need assessment built in to tailor support to the individual.”

Depression, anxiety, and patterns of mental health care among men with prostate cancer on androgen deprivation therapy (ADT)

Journal article extract: Journal of Clinical Oncology Volume 38 Supplement 2020

Phoebe A. Tsao, Ryan Ross, Amy S. B. Bohnert, Bhramar Mukherjee, and Megan Veresh Caram

DOI: 10.1200/JCO.2020.38.15_suppl.12100

“Androgen deprivation therapy (ADT) is associated with an increased risk of depression and anxiety, raising the concern that a substantial portion of men with prostate cancer need mental health care. We sought to investigate the development of depression or anxiety and subsequent patterns of mental health care in men with prostate cancer on ADT. Results showed that among 37,388 men in the final analytic cohort, 11.3% received new diagnoses of depression or anxiety. Those who received a diagnosis of depression or anxiety were more likely to be white; no differences were noted in age, education, or household income. Among those with a new diagnosis of depression or anxiety, 34.9% a selective serotonin reuptake inhibitor, 11.6% a serotonin norepinephrine reuptake inhibitor, and 19.9% a benzodiazepine, a drug class with risks of dependence, cognitive impairment, falls, and fractures. Receipt of psychotherapy was rare (0.07%). Further investigation into how to improve the mental health care of men on ADT is needed.”