Distress and Quality of Life Among Patients with Advanced Genitourinary Cancers

EUF-827; No. of Pages 5 E U RO P E A N U R O L O GY F O C U S X X X ( 2 019 ) X X X– X X X

available at www.sciencedirect.com journal homepage: www.europeanurology.com/eufocus

Review – Kidney Cancer

Distress and Quality of Life Among Patients with Advanced Genitourinary Cancers Cristiane Decat Bergerot a, Errol J. Philip b, Paulo Gustavo Bergerot a, Sumanta Kumar Pal a,* a

Department of Medical Oncology and Experimental Therapeutics, City of Hope Comprehensive Cancer Center, Duarte, CA, USA; b University of California San

Francisco, San Francisco, CA, USA

Article info

Abstract

Article history: Accepted October 17, 2019

Patients with advanced genitourinary cancers face many challenges throughout their disease trajectory, and many will experience clinically relevant psychosocial distress. Certain groups, including female gender, younger age (and older age for suicide), unmarried status, and non–clear cell histology, remain at a higher risk, and evidence suggests that those with kidney and bladder cancers may be at an increased risk of suicide. Routine psychosocial screening, with brief validated tools, has the ability to identify patients’ unmet needs, assist the health care team in addressing such symptoms, and subsequently improve quality of life, adherence, and clinical outcomes. Effective supportive care modalities are available that address common patient needs in the context of incurable disease (eg, emotional and physical symptoms); however, challenges remain in terms of patient acceptance and access through insurance coverage. As a result, remote home-based interventions have emerged with the potential to mitigate emotional symptom burden and improve disease adjustment. In this study, we highlight studies reporting on the prevalence of psychosocial distress and associated risk factors in advanced genitourinary cancers, and review evidence-based interventions for the management of distress, including distress screening and psychosocial interventions. Patient summary: This mini-review reports the prevalence of psychosocial distress and associated risk factors among patients with advanced kidney, bladder, or prostate cancer. We found that patients with these types of advanced genitourinary cancers are at a great risk of distress, including suicide, with consequent impairments in quality of life. We recommend that a distress screening program be incorporated as the standard of care and that referrals to appropriate psychosocial interventions be available to assist patients in greatest need. © 2019 Published by Elsevier B.V. on behalf of European Association of Urology.

Associate Editor: Richard Lee Keywords: Distress Quality of life Renal cell carcinoma Urothelial carcinoma Prostate cancer

* Corresponding author. Department of Medical Oncology and Experimental Therapeutics, 1500 East Duarte Road, Duarte, CA 91010, USA. Tel.: +1 626 256 4673, Fax: +1 626 301 8233. E-mail address: [email protected] (S.K. Pal).

1.

Introduction

Novel immunotherapies and genome-targeted treatments for patients with advanced genitourinary cancers have improved clinical outcomes and created a new treatment landscape; however, disease, treatment-related side effects,

and symptom burden can be significant and exert a notable impact on patient’s mood and quality of life (QoL). Efforts have long been under way to enhance psychosocial symptom monitoring (eg, distress screening, QoL assessment, or patient-reported outcomes) and improve supportive care modalities across the cancer care continuum. The

https://doi.org/10.1016/j.euf.2019.10.014 2405-4569/© 2019 Published by Elsevier B.V. on behalf of European Association of Urology.

Please cite this article in press as: Bergerot CD, et al. Distress and Quality of Life Among Patients with Advanced Genitourinary Cancers. Eur Urol Focus (2019), https://doi.org/10.1016/j.euf.2019.10.014

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incorporation of patient-reported outcomes and distress screening into routine care can help identify unmet patient needs, can improve timely supportive care referrals, and has been associated with improved outcomes and survival [1]. In this mini-review, we define psychosocial distress, explore its impact on QoL in the advanced genitourinary cancer setting, and describe current strategies for psychosocial screening and supportive care delivery. Psychosocial distress in advanced genitourinary 2. cancers Psychosocial distress represents a broad and inclusive construct that includes not only emotional symptoms (anxiety and depression), but also practical (financial and transportation), physical (fatigue, pain, and side effects of treatment), and spiritual problems. Studies across cancer types suggest that more than one-third of patients will suffer from moderate to severe distress at some point in their cancer care [2]. Distress can vary based on the type of cancer, with patients with genitourinary, prostate (30%), kidney (20%), and bladder (12%) cancers reporting varying rates of clinically relevant distress (Table 1) [2–4]. Such differences between cancer types can be the result of clinical factors (eg, gender, age, and characteristics of the disease) and willingness to report distress [5], as well as the type of surgery, burden of treatment side effects (eg, recovery and rehabilitation), psychophysical changes (eg, alterations in body function, sexual dysfunction, and urinary incontinence), and degree of pain and fatigue associated with cancer therapy. Despite the high rates of distress among patients with cancer, emotional symptoms are under-reported and consequently undertreated. In an effort to address this clinical reality, distress was recognized as the sixth vital sign in cancer care more than a decade ago, with renewed commitment to the science of caring [6]. This has led to the development of validated measures and evidencebased recommendations to integrate psychosocial screening into routine care and assist clinicians in providing

comprehensive, effective, and efficient evidence-based supportive care [7–9]. Several standardized and validated instruments exist in both paper-and-pencil and electronic versions (Table 2), including the Distress Thermometer, Hospital Anxiety and Depression Scale, Brief Symptom Inventory-18, and Patient-Reported Outcomes Measurement Information System-Distress [10–13]. Incorporation of psychosocial screening into clinical care can have a multitude of benefits, including identifying unmet patient needs, reducing symptom burden, improving communication between patients and their health care team, ensuring best practices in comprehensive care, better allocating appropriate resources, and guiding the development and implementation of psychosocial interventions (Fig. 1) [14]. Patients should be screened during the periods of increased vulnerability, including at diagnosis, and at the beginning and end of treatment, and if there is recurrence or disease progression. Importantly, screening represents a first step and must be combined with routine review of results, follow-up assessments, and referrals as needed. Several studies have identified factors that can increase the risk of experiencing distress. Among a cohort of patients with kidney cancer, a high proportion of patients reported distress (77%), with an increased risk of such symptoms associated with disease recurrence, non–clear cell histology, younger age, and female gender [15]. Patients with poor prognosis are also at a greater risk of experiencing distress, most notably in the form of anxiety and depression [16]. A study conducted by Klaassen and colleagues [17] showed that patients with genitourinary cancers are also at risk of suicide, with those diagnosed with kidney and bladder cancers representing the most vulnerable groups. Sociodemographic characteristics, such as older age and unmarried status, were also associated with a greater risk of suicide in this study. Despite this growing evidence base, the majority of results are derived from small sample sizes and with methodological limitations, and thus further research in this setting is warranted. As might be expected, patients diagnosed with metastatic cancer, regardless of type, tend to report high levels of

Table 1 – Summary of aspects related to distress in genitourinary cancers. Renal cell carcinoma

Urothelial carcinoma

Prostate

Prevalence of distress (%) [2–4] Target problems [15,17,19,33–36]

20 Fear of progression Lack of knowledge about their disease and treatment Treatment side effects (sexual and urinary function, fatigue, and pain) Financial distress Depression and anxiety

30 Fear of recurrence or progression Uncertainty about choice of treatment options Treatment side effects (sexual and urinary function, weakness, hot flashes, fatigue, and pain)

Psychological intervention

Minimal evidence

12 Fear of progression Treatment side effects (sexual and urinary function) Financial distress Depression and anxiety after diagnosis and treatment Risk of suicide Pre-existing depression and/or anxiety Minimal evidence

Research gaps

Long-term psychological changes Psychological intervention

Long-term psychological changes Mental health differences across age, gender, and race Psychological intervention

Patients respond well to education and brief psychotherapies Current treatment: long-term medical and psychological benefits and complications

Please cite this article in press as: Bergerot CD, et al. Distress and Quality of Life Among Patients with Advanced Genitourinary Cancers. Eur Urol Focus (2019), https://doi.org/10.1016/j.euf.2019.10.014

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Table 2 – Patient-reported outcome surveys. Measure

Domains

Length (min)

Distress Thermometer [10] Problem List Hospital Anxiety and Depression Scale [11] Profile Mood States [13] Brief Symptom Inventory-18 [12] Emotion Thermometer [37] General Health Questionnaire-12 [38]

Global item Practical, family, emotional, spiritual, and physical problems Emotional symptoms (anxiety and depression) Emotional symptoms (anxiety and depression) Emotional (anxiety and depression) and somatization Distress, anxiety, depression, anger, and help Emotional (distress, anxiety, and depression), physical (fatigue), and social functioning Emotional symptoms Emotional symptoms caused by traumatic event Emotional symptoms (general anxiety related to prostate cancer and treatment, fear of recurrence, and anxiety related to PSA testing) Emotional symptoms (depression) Emotional symptoms (depression) Emotional and physical problems Physical, social/family, emotional, and physical problems

<5

Fear of Cancer Recurrence-7 [39] Impact of Event Scale [40] The Memorial Anxiety Scale for Prostate Cancer [41] The Geriatric Depression Scale [42] Center for Epidemiologic Studies Depression Scale [43] Edmonton Symptom Assessment Scale [44] Functional Assessment of Cancer Therapy [45]

5–10 5 5 <5 5 5 5 10 5–7 5–10 5 5–10

PSA = prostate-specific antigen.

Fig. 1 – Process of psychosocial care.

distress, with subsequent impairment in QoL, worse clinical outcomes, and increased health care resource utilization [3,18]. Fear of cancer recurrence/progression is also an important contributor and has been associated with greater distress [19]. Such fear can also fail to diminish over time and is characterized by intrusive thoughts about cancer, interpretation of symptoms as a sign of recurrence/progression, limited capacity to plan for the future, and negative belief patterns [20]. In an attempt to obtain control, patients can become hypervigilant for signs of progression, with frequent self-examinations and symptom monitoring, and consequent difficulties in adjusting to the survivorship phase [20]. Once again, little evidence exists regarding rates of such symptoms among patients with prostate, kidney, or bladder cancer.

3.

Strategies for psychosocial care delivery

Psychosocial and supportive care modalities can help manage distress, improve QoL, and assist patients in better coping with their prognosis and treatment side effects. Despite evidence that psychosocial interventions are effective in the treatment of anxiety and depression in patients with cancer, there remains limited utilization of such services due to insurance coverage, availability, and undetected symptomatology by the broader medical team [21]. At present, several options exist, including tailored

psychosocial interventions that specifically address the consequences of advanced cancer. In-person psychotherapy and support groups are the most common forms of psychosocial care delivery, and often include cognitive-behavioral and psychoeducational components, each of which possesses the greatest evidence base [22]. There are also promising interventions that should be highlighted, including Managing Cancer and Living Meaningfully (CALM) and Individual Meaning-Centered Psychotherapy (IMCP) [23,24]. Both interventions are delivered in person to individuals, were developed to target patients with advanced cancer, and have demonstrated effectiveness in alleviating distress and improving QoL. CALM was developed for patients with metastatic cancer and focuses on symptom management, effective communication with the health care team, changes in self and relations with others, sense of meaning and purpose, and future planning and mortality [23]. IMCP helps patients develop or enhance their sense of meaning in their lives, through sharing their concerns, describing experiences, and identifying challenges [24]. However, both types of interventions require that counselors receive specialized short training. Importantly, advances in technology have enabled some therapeutic modalities to be delivered remotely or through home-based treatment. For example, expressive writing interventions possess an extensive evidence base and involve assigning patients tasks to write about, with a focus on how patients perceive, understand, and find meaning in

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their cancer experience [25]. Online self-management interventions have also been developed and focus on managing physical symptoms (eg, pain and fatigue) and emotional well-being (distress, anxiety, depression, and fear of cancer recurrence) [26–28]. These home-based interventions provide the opportunity to reach more patients and to address common barriers to accessing supportive care (eg, cost and travel). Many of these interventions exist entirely online and do not require therapist support, whereas others can include remote input from supportive care counselors. Several studies have shown that these types of interventions are effective in addressing distress and improving QoL among cancer patients [29–32].

manuscript (eg, employment/affiliation, grants or funding, consultancies, honoraria, stock ownership or options, expert testimony, royalties, or patents filed, received, or pending), are the following: None.

Funding/Support and role of the sponsor: None.

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4.

Conclusions

2001;10:19–28. [3] Bergerot CD, Clark KL, Ashing KT, et al. Biopsychosocial distress and clinical outcome in metastatic renal cell carcinoma. Palliat Support

Many patients with metastatic genitourinary cancers experience clinically relevant distress and impaired QoL at some stage of the disease continuum. Notably, there exists a dearth of literature examining distress and well-being among this population, suggesting that these prevalence rates of psychosocial distress may be underestimated and thus under-recognized. In brief, validated distress screening programs can form part of a comprehensive treatment program, and assist health care teams in identifying patients in need of support, help guide referral pathways, and ensure that distress and QoL concerns are addressed in a timely manner. Ideally, given the complex and multifactorial causes of distress across the disease continuum, interdisciplinary supportive care teams should be available to conduct screening and follow-up assessments, and provide treatment when needed. For patients with moderate to severe emotional distress, evidence-based in-person and home-based interventions exist and can be tailored to patient circumstances and clinic resources. Further research is needed to examine the efficacy of distress screening programs in this patient population, including their ability to address symptom burden, improve QoL, and potentially influence clinical outcomes.

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Please cite this article in press as: Bergerot CD, et al. Distress and Quality of Life Among Patients with Advanced Genitourinary Cancers. Eur Urol Focus (2019), https://doi.org/10.1016/j.euf.2019.10.014