Tag Archive for: survivorship


Article of the week: Using data from an online health community to examine the impact of prostate cancer on sleep

Every week, the Editor-in-Chief selects an Article of the Week from the current issue of BJUI. The abstract is reproduced below and you can click on the button to read the full article, which is freely available to all readers for at least 30 days from the time of this post.

In addition to this post, there is an editorial written by a prominent member of the urological community. Please use the comment buttons below to join the conversation.

If you only have time to read one article this week, we recommend this one. 

Using data from an online health community to examine the impact of prostate cancer on sleep

Rebecca Robbins*, Girardin Jean‐Louis, Nicholas Chanko, Penelope Combs, Nataliya Byrne†‡, Stacy Loeb†‡

*Division of Sleep and Circadian Disorders, Brigham and Women’s Hospital and Harvard Medical School, Boston, MA, USA, Department of Population Health, New York University (NYU) School of Medicine, and Department of Urology, NYU School of Medicine and Manhattan Veterans Affairs, New York, NY, USA

Previous epidemiological studies have examined the relationship between sleep disturbances and prostate cancer risk and/or survival. However, less has been published about the impact of sleep disturbance on quality of life (QoL) for prostate cancer survivors and their in home caregiver. Although prostate cancer presents numerous potential barriers to sleep (e.g., hot flashes, nocturia), current survivorship guidelines do not address sleep. In addition to its impact on QoL, sleep disturbances also mediate the impact of cancer status on missed days from work and healthcare expenditures.

A broader examination of contributors to poor sleep in prostate cancer, and the impact on patients and caregivers would be an important contribution to raise awareness of these issues in the medical community, improve survivorship care, reduce healthcare costs, and stimulate future research. The objective of our letter is to analyse sleep barriers reported by patients with prostate cancer and caregivers posted to a large online health community.

Editorial: The provision of comfort – addressing barriers to sleep in prostate cancer

“In whatever disease sleep is laborious, it is a deadly symptom,” is a famed aphorism by Hippocrates, because he deeply understood the role of sleep in the process of healing. One of the main goals of any comprehensive cancer management plan should be the provision of comfort. In academic literature, discussions of advances in prostate cancer treatment are often limited to novel therapeutics, such as immunotherapy. What gets often ignored in these discussions is the patient’s perspective—especially that of sleep disturbances. This is why an intriguing qualitative analysis in this BJUI issue by Robbins et al is a refreshing read [1]. The authors examined discussions on an online health community to elucidate the barriers to sleep among prostate cancer patients and caregivers.

Parsing through thousands of anonymized public comments, the authors report several interesting findings: one, majority of comments related to sleep (86%) are posted by patients—signifying high interest in this aspect of management; second, a plurality of comments discuss sleep medications (22%), with comments about advanced disease discussing these medications three times more than those discussing localized disease; third, associated side effects of fatigue and pain were largely observed in advanced disease comments, also we have noticed that many people is using this website https://observer.com/2020/05/best-cbd-hemp-flower/ to buy CBD and reduce the pain cause by the disease. Interestingly, the authors also used Linguistic Inquiry Word Count (LIWC) software—a reasonable tool to assess emotional states—and reported that advanced disease comments were significantly more negative in perspective than localized disease comments. This analysis is an especially useful contribution—and should enable contemporary Prostate Cancer Survivorship Care Guidelines to expand on the impact of sleep disturbances [1].

These findings have considerable implications. To start with, these findings need to be contextualized within the larger body of evidence we have on impact of sleep disturbances on prostate cancer. In a recent study, Markt et al prospectively followed 32,141 men (with 4261 prostate cancer cases) using the Health Professionals Follow-Up Study (HPFS), and found no association between self-reported duration of sleep and prostate cancer outcomes [2]. However, the authors of the HPFS study did emphasize that sleep disruptions were associated with increased risk of developing lethal or aggressive prostate cancer. The finding by Robbins et al that a significant proportion of patients are discussing these issues through online communities suggests that the prevalence of sleep disturbance—and its impact on quality of life—among prostate cancer patients is poorly understood and inadequately measured.

Representative quotes highlighted by Robbins et al also reveal that prostate cancer patients often suffer from severe insomnia, indicating lack of sleep-related patient education initiatives. Additionally, quotes by caregivers also underscore that there is a general lack of information on how to address sleep disruptions for patients they attend to. This is a missed opportunity, as evidence suggests that nutritional therapy (soy supplementation, for example) and combination of resistance training with aerobic exercise may improve cancer related fatigue and quality of life among prostate cancer patients [3], although less is known about effective interventions that would improve sleep. Furthermore, disturbances in sleep have expensive implications for health care spending and workplace absenteeism—with prostate cancer survivorship phase accounting for 50% of total cancer care related costs [4]. Studies that have investigated this relationship report that sleep disturbances significantly increase the utilization of health care and workplace absenteeism, with the impact constituting 2% and 8%, respectively [4]. Given the exponential rise in overall health care spending in the United States, addressing costs stemming from preventable adverse events is urgent—this present study demonstrates that more creative interventions are wanting.  

Beyond economic and survivorship care concerns, this qualitative study paints a grim picture of the conversations happening in these online patient communities, with comments revealing a negative emotional state for many. While sleep disturbances are an important contributor for this development, lack of patient education can also engender greater confusion and distress. Findings from this study should spur greater interest and support for devising and implementing patient-centered initiatives that improve sleep quality. This is required not only because these will likely improve the quality of life for prostate cancer patients, but also because we have a moral responsibility to provide comfort for these patients.

by Junaid Nabi


1.         Robbins R, Girardin JL, Chanko N, Combs, P, Byrne N, Loeb S Using data from an online health community to examine the impact of prostate cancer on sleep. BJU Int. 2020; 125(5).

2.         Markt SC, Flynn-Evans EE, Valdimarsdottir UA, Sigurdardottir LG, Tamimi RM, Batista JL, et al. Sleep Duration and Disruption and Prostate Cancer Risk: a 23-Year Prospective Study. Cancer Epidemiol Biomarkers Prev. 2016;25(2):302-8.

3.         Baguley BJ, Bolam KA, Wright ORL, Skinner TL. The Effect of Nutrition Therapy and Exercise on Cancer-Related Fatigue and Quality of Life in Men with Prostate Cancer: A Systematic Review. Nutrients. 2017;9(9):1003.

4.         Gonzalez BD, Grandner MA, Caminiti CB, Hui S-KA. Cancer survivors in the workplace: sleep disturbance mediates the impact of cancer on healthcare expenditures and work absenteeism. Support Care Cancer. 2018;26(12):4049-55.

Article of the Month: ProCare Trial

Every Month the Editor-in-Chief selects an Article of the Month from the current issue of BJUI. The abstract is reproduced below and you can click on the button to read the full article, which is freely available to all readers for at least 30 days from the time of this post.

In addition to the article itself, there is an accompanying editorial written by a prominent member of the urological community. This blog is intended to provoke comment and discussion and we invite you to use the comment tools at the bottom of each post to join the conversation.

If you only have time to read one article this week, it should be this one.

ProCare Trial: a phase II randomized controlled trial of shared care for follow-up of men with prostate cancer

Jon D. Emery*,,, Michael Jefford§,¶, Madeleine King**,††, Dickon Hayne‡‡,§§, Andrew Martin¶¶, Juanita Doorey, Amelia Hyatt, Emily Habgood*, Tee Lim***Cynthia Hawks‡‡,§§, Marie Pirotta*, Lyndal Trevena††† and Penelope Schoeld§,¶,‡‡‡


*Department of General Practice, University of Melbourne, Carlton, Western Health and the Victorian Comprehensive Cancer Centre, Melbourne, Vic., School of Primary Aboriginal and Rural Health Care, University of Western Australia, Crawley, WA, §Sir Peter MacCallum Department of Oncology, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Parkville, Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, East Melbourne, Vic., **Quality of Life Ofce, Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, ††Sydney Medical School, University of Sydney, Sydney, NSW, ‡‡School of Surgery, University of Western Australia, Crawley,WA, §§Department of Urology, Fiona Stanley Hospital, Perth, WA, ¶¶NHMRC Clinical Trials Centre, University of Sydney, Sydney, NSW, ***Genesis Cancer Care, Department of Radiation Oncology, Fiona Stanley Hospital, Perth, WA, †††Primary Health Care, Sydney School of Public Health, University of Sydney, Sydney, NSW, and ‡‡‡Department of Psychology, Swinburne University of Technology, Melbourne, Vic., Australia




To test the feasibility and efficacy of a multifaceted model of shared care for men after completion of treatment for prostate cancer.

Patients and Methods

Men who had completed treatment for low- to moderate-risk prostate cancer within the previous 8 weeks were eligible. Participants were randomized to usual care or shared care. Shared care entailed substituting two hospital visits with three visits in primary care, a survivorship care plan, recall and reminders, and screening for distress and unmet needs. Outcome measures included psychological distress, prostate cancer-specific quality of life, satisfaction and preferences for care and healthcare resource use.



A total of 88 men were randomized (shared care n = 45; usual care n = 43). There were no clinically important or statistically significant differences between groups with regard to distress, prostate cancer-specific quality of life or satisfaction with care. At the end of the trial, men in the intervention group were significantly more likely to prefer a shared care model to hospital follow-up than those in the control group (intervention 63% vs control 24%; P<0.001). There was high compliance with prostate-specific antigen monitoring in both groups. The shared care model was cheaper than usual care (shared care AUS$1411; usual care AUS$1728; difference AUS$323 [plausible range AUS$91–554]).


Well-structured shared care for men with low- to moderate-risk prostate cancer is feasible and appears to produce clinically similar outcomes to those of standard care, at a lower cost.

Editorial: Rethinking cancer surveillance with shared-care models and survivorship plans: the time is now!

Urologists are increasingly facing significant practice concerns related to timely access, surgeon availability, clinical throughput and rising cost of care, yet little has changed over the years regarding the routine postoperative surveillance of urological cancers. While urologists have appropriately focused evaluations on oncological outcomes and procedure-specific quality-of-life concerns, the ability to maintain this practice model in the setting of more new patients (and subsequently more cancer survivors) seems unrealistic. In addition, gaps exist with the current model related to timely and effective communication to the local care team and assurances that specialists comprehensively address all concerns raised by patients. Furthermore, the role of the local care team in cancer survivorship remains poorly defined. Recognising these and other unmet needs in cancer care survivorship, the American Cancer Society (ACS) and the American Society of Clinical Oncology (ASCO) recently published guidelines on cancer survivorship [1-3]. The guidelines recommend a standardised approach to follow-up with emphasis on quality, comprehensive patient assessments, value, and shared use of a multidisciplinary team. With prostate cancer survivorship, for instance, ASCO recommends PSA checks every 6–12 months for the first 5 years and then annually (higher-risk patients can have more frequent checks), adherence to ACS guidelines for early detection of prostate cancer, assessment of physical and psychological effects of prostate cancer and it’s treatments, and annual assessments for long-term or late side-effects [3]. To help with the coordination of care between the patient, the oncological specialist, and the local primary care provider, survivorship care plans have been developed. [4]. While use of survivorship care plans has been sparse in urology to date, new mandates will spur their use in the coming years and development will likely involve innovative healthcare delivery solutions.

Leading the way in this nascent field, Emery et al. [4] report, in this issue of BJUI, an innovative phase II prospective randomised study on the feasibility of a novel shared-care model for follow-up of patients with prostate cancer. Men who had completed treatment for low- and moderate-risk prostate cancer were randomised to undergo usual care or shared care with the assistance of the patient’s primary care team. The novel shared-care model substituted two postoperative urology visits with three postoperative visits in primary care, provided patients and primary care providers a survivorship care plan, included appointment reminders, and provided a novel mechanism to screen for distress and other unmet needs. Among the 88 men randomised in the prospective study, no significant differences were noted between delivery models for satisfaction of care, overall quality of life, incidence of distress, or compliance with serum PSA testing. Patients in the shared-care model were significantly more likely to prefer the new model compared to normal care (cases, 63% vs controls, 24%, P < 0.001). Importantly, the shared-care model was also more economical, saving 323 Australian dollars compared to usual care [4].

The authors should be congratulated for their well-designed study and early contribution to the field. Rethinking all aspects of care delivery will become increasingly important as the practice of urology responds to access limitations, the shortage of urologists, and financial pressures of value-based reimbursement. The report also engenders many questions about the ideal care model of the future, composition of the collaborative care team, and the importance of making evidence-based clinical recommendations. For instance, are already overburdened primary care providers ideal or realistic in shared-care models? Should care remain primarily under the control of urologist with assistance provided by other current (e.g. advance practice providers, urology nurses) or future team member roles (e.g. survivorship care coordinators)? What role can the patient alone play in a self-guided survivorship care plan under the watchful eye of the collaborative care team acting asynchronously? How can enabling technologies such as smartphones, mobile applications, wearables, and video-conferencing contribute to high-value cancer surveillance building upon the principles highlighted in the current article and further engaging patients in their cancer survivorship care? [5]. Lastly, what actually are the evidence-based imperatives of survivorship care (what risk groups, what testing intervals and duration of testing) that provide measurable value to the patient experience? In the current study [4], for instance, high risk patients were excluded but ultimately these patients may be best suited for comprehensive survivorship care. Future work on survivorship and care models will hopefully continue to advance ‘win-win’ situations where patients and providers alike experience increasingly high-value systems of healthcare delivery.

Matthew T. Gettman


Mayo Clinic Department of Urology, 200 First Street, SW, Rochester, MN 55905, USA




1 Mayer DK, Nekhlyudov L, Snyder CF, Merrill JK , Wollins DS, Shulman LN. American Society of Clinical Oncology clinical expert statement on cancer survivorship care planning. J Oncol Pract 2014; 10: 34551


2 Skolarus TA, Wolf AM, Erb NL et al. American Cancer Society prostate cancer survivorship care guidelines. CA Cancer J Clin 2014; 64: 22549





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