Measuring patients’ expectations regarding health-related quality-of-life outcomes associated with prostate cancer surgery or radiotherapy

doi:10.1016/j.urology.2006.08.1092

Urology

Volume 68, Issue 6, December 2006, Pages 1224-1229

This study was presented in part at the 39th ASCO Annual Meeting, Chicago, Illinois, May 31 to June 3, 2003.

https://doi.org/10.1016/j.urology.2006.08.1092 Get rights and content

Abstract

Objectives

Establishing realistic health-related quality-of-life (HRQOL) expectations before the choice of cancer treatment is made is an important goal of patient counseling. We prospectively studied the pretreatment expectations of prostate cancer-specific HRQOL with an adapted Expanded Prostate Cancer Index Composite instrument.

Methods

Baseline pretreatment Expanded Prostate Cancer Index Composite scores, pretreatment expectation scores, and 1-year posttreatment scores were prospectively collected for 50 patients undergoing radical prostatectomy or external beam radiotherapy. The pretreatment expectations and observed HRQOL scores at 1 year after treatment were compared for the urinary incontinence, urinary irritation, bowel, sexual, and hormonal domains.

Results

The expectation scores did not differ from the HRQOL scores at 1 year for urinary irritation, bowel function, and the hormonal domain. However, the sexual domain expectations were 22.5% greater than observed sexual domain scores 1 year after treatment (P <0.0001, 99% confidence interval 11 to 34) for both surgery and radiotherapy subjects. Anxiety, depression, education level, and income did not correlate with the expectations for HRQOL outcomes. A modest correlation was found between optimism and greater expectations for the sexual domain (Pearson correlation coefficient 0.38, P <0.001).

Conclusions

Measuring HRQOL expectations before treatment may elucidate discrepancies between patient expectations and observed outcomes. This pilot study found that patients’ expectations regarding urinary and bowel outcomes more closely reflected their eventual observed outcome than did their expectations regarding sexual outcome.

Section snippets

Material and methods

Consecutive patients visiting the multidisciplinary urologic oncology clinic during their initial consultation at a tertiary referral center were solicited, and patients who agreed and returned a baseline HRQOL survey were enrolled. Sequentially, the baseline pretreatment HRQOL scores, pretreatment expectation scores, and 1-year posttreatment scores were collected in patients undergoing radical prostatectomy or external beam radiotherapy.

The comprehensive HRQOL survey comprises the Rand Medical

Results

A total of 100 eligible patients provided written informed consent and were enrolled in the study. Of these patients, 81 returned the baseline and expectation surveys. Of the 81 patients, 24 were excluded from the analysis because they completed the expectation instrument after beginning treatment and not before treatment as required by the study design. Of the 57 remaining subjects, 50 returned the 1-year posttreatment HRQOL surveys (24 who had undergone radical prostatectomy and 26 who had

Comment

The pretreatment expectations for HRQOL outcomes 1 year after contemporary prostate cancer treatments were fulfilled for the urinary, bowel, and hormonal domains; however, patients anticipated sexual outcomes at 1 year significantly superior to their observed outcomes for both surgery and external beam radiotherapy at 1 year. In this study, the sexual domain score at 1 year was 31.5 and 35.5 for the surgery and radiotherapy groups, respectively, despite coaching the patients to improve sexual

Conclusions

HRQOL expectations are a novel tool of evaluation that may assist in, and improve, patient education to narrow the discrepancy between the anticipated outcomes and reality; thus, empowering patients to make informed treatment decisions. Ultimately, attempts by the care giving practitioner, or others, to ascertain patients’ perceptions of information with which they are provided regarding outcomes expectations may help reduce the discrepancies between patient expectations and observed realities.

Acknowledgment

To Monika Benedict, Julie Priess, and Kathy Grijalva for their expert help with data management and William Underwood, M.D., and Angela Fagerlin, Ph.D., for their support.

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Guidelines for Sexual Health Care for Prostate Cancer Patients: Recommendations of an International Panel
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Patients with prostate cancer suffer significant sexual dysfunction after treatment which negatively affects them and their partners psychologically, and strain their relationships.
We convened an international panel with the aim of developing guidelines that will inform clinicians, patients and partners about the impact of prostate cancer therapies (PCT) on patients’ and partners’ sexual health, their relationships, and about biopsychosocial rehabilitation in prostate cancer (PC) survivorship.
The guidelines panel included international expert researchers and clinicians, and a guideline methodologist. A systematic review of the literature, using the Ovid MEDLINE, Scopus, CINAHL, PsychINFO, LGBT Life, and Embase databases was conducted (1995–2022) according to the Cochrane Handbook for Systematic Reviews of Interventions. Study selection was based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Each statement was assigned an evidence strength (A-C) and a recommendation level (strong, moderate, conditional) based on benefit/risk assessment. Data synthesis included meta-analyses of studies deemed of sufficient quality (3), using A Measurement Tool to Assess Systematic Reviews (AMSTAR).
Guidelines for sexual health care for patients with prostate cancer were developed, based on available evidence and the expertise of the international panel.
The guidelines account for patients’ cultural, ethnic, and racial diversity. They attend to the unique needs of individuals with diverse sexual orientations and gender identities. The guidelines are based on literature review, a theoretical model of sexual recovery after PCT, and 6 principles that promote clinician-initiated discussion of realistic expectations of sexual outcomes and mitigation of sexual side-effects through biopsychosocial rehabilitation. Forty-seven statements address the psychosexual, relationship, and functional domains in addition to statements on lifestyle modification, assessment, provider education, and systemic challenges to providing sexual health care in PC survivorship.
The guidelines provide clinicians with a comprehensive approach to sexual health care for patients with prostate cancer.
The strength of the study is the comprehensive evaluation of existing evidence on sexual dysfunction and rehabilitation in prostate cancer that can, along with available expert knowledge, best undergird clinical practice. Limitation is the variation in the evidence supporting interventions and the lack of research on issues facing patients with prostate cancer in low and middle-income countries.
The guidelines document the distressing sexual sequelae of PCT, provide evidence-based recommendations for sexual rehabilitation and outline areas for future research.
Wittmann D, Mehta A, McCaughan E, et al. Guidelines for Sexual Health Care for Prostate Cancer Patients: Recommendations of an International Panel. J Sex Med 2022;19:1655–1669.
Barriers to sexual recovery in men with prostate, bladder and colorectal cancer
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Citation Excerpt :
Although men on PDE5-i have improved erectile function as measured by IIEF, their confidence in the drugs diminishes – demonstrating that excessively high expectations may lead to perceived lack of efficacy, and ultimately discontinuation of medications [25]. Symon et al. also showed that sexual bother following CaP treatment was strongly correlated with pretreatment expectations, and less so with the actual loss of sexual function [26]. It is not clear whether patients are informed that PDE5-i do not work as pro-erectile aids during the first months after prostatectomy, but may work later when erectile function improves.
Survivors of prostate, bladder, and colorectal cancer endure many sexual side-effects of treatment that negatively impact their relationships and diminish their quality of life. Multiple barriers exist in addressing men's sexual concerns in oncological care.
To describe barriers of sexual recovery in men with prostate, bladder, and colorectal cancer.
We searched PubMed for peer-reviewed, English-language articles published from 1999 to 2019 using the following search terms: “prostate cancer,” or “bladder cancer,” or “colorectal cancer,” and “male,” and “sexual function,” or “sexual barrier” or “sexual dysfunction.” Criteria for inclusion consisted of peer-reviewed articles (review, cross-sectional, longitudinal, interventional, or pilot studies) addressing sexual issues in men with a history of prostate, bladder, or colorectal cancer.
Barriers to sexual recovery in men with prostate, bladder, and colorectal cancer include psychosocial barriers such as the feeling of loss, grief, depression and anxiety, the poor utilization, and excessive cost of pro-erectile aids, a diminished sense of masculinity and reluctance to seek help for sexual problems, as well as poor couple coping. Barriers in healthcare also exist, as healthcare providers often do not effectively address sexual issues due to poor communication, lack of comfort in discussing sexual issues, time constraints, and patients’ hesitation to initiate discussions on sexual dysfunction. Patients with stomas and gay, bisexual, and queer men face additional challenges in their recovery of sexual intimacy. Barriers to sexual recovery are present in men during all stages of cancer and all modalities of treatment including surgery, radiation, or androgen deprivation therapy.
There are multiple overlapping psychosocial and healthcare system barriers to sexual recovery after prostate, bladder, and colorectal cancer treatment. Oncological providers must be cognizant of these complex barriers so they can facilitate patients’ access to resources needed for successful sexual recovery after genitourinary cancer treatment. Evidence based interventions, such as couple psychosexual counseling and peer support should be implemented via multidisciplinary care.
Assessing the Impact of Decision Aid Use on Post Prostatectomy Patient Reported Outcomes
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To evaluate whether completing a decision aid, Personal Patient Profile – Prostate (P3P), prior to prostatectomy, affects self-reported bother from post-prostatectomy urinary incontinence and erectile dysfunction.
This retrospective analysis included data from men with newly diagnosed clinically localized, very low to intermediate risk prostate cancer who elected for prostatectomy within the Michigan Urological Surgery Improvement Collaborative between 2018-2021. Multivariable logistic regression models were used to estimate the association between P3P use and bother from post prostatectomy erectile dysfunction and urinary incontinence as measured by the Expanded Prostate Cancer Index Composite (EPIC-26).
Among the 3987 patients included, 7% used P3P (n = 266). Men who used P3P reported significantly less bother from erectile dysfunction at 6 months vs non-users (aOR 0.42 [95% CI 0.27-0.66]). At 12 months, the effect of P3P on bother from erectile dysfunction was not statistically significant (aOR 0.62 [95% CI 0.37-1.03]). Men who used P3P did not have a statistically significant difference in bother from urinary incontinence (3-month: aOR 0.56 [95% CI 0.30-1.06]; 6-month; aOR 0.79 [95% CI 0.31-1.97]).
Within the stated limitations of this study, we find that use of a decision aid for localized prostate cancer was associated with decreased odds of men being bothered from sexual dysfunction but not urinary incontinence at 6 months post prostatectomy.
Editorial Comment
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Developing a Patient-Centered Model of Prostate Cancer Care: Patient Satisfaction With a Survivorship Program Embedded in Urologic-Oncologic Care
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To evaluate patients’ and partners’ satisfaction with a prostate cancer survivorship program embedded in urologic-oncologic care. As a part of quality improvement activity, we developed a patient and partner-centered, biopsychosocial support program for men and partners coping with the urinary and sexual side-effects of surgical treatment for prostate cancer. The program became a part of usual care for all prostate cancer patients.
Patients who saw both an advanced practice provider and a sex therapist between August 1, 2018 and July 31, 2019 were eligible. Surveys packets were sent to 146 patients with surveys included for partners (N = 292). We used descriptive statistics to characterize participant responses.
Responses were received from 88 patients and 70 partners (56% response rate for the group). Patients and partners reported very high or fairly high satisfaction with the rehabilitation activities of the program (86-97% and 90%-100%, respectively); 91% of patients and 84% of partners thought having pre-operative education and post-operative rehabilitation was a good or fairly good idea; 83% of patients and 79% of partners would very much or somewhat recommend the program to a friend who was considering surgical treatment for prostate cancer.
Embedding a patient and partner-centered prostate cancer survivorship support program in oncologic care can positively impact patients’ and partners’ engagement in and satisfaction with post-operative rehabilitation.
Hard Times: Prostate Cancer Patients’ Experiences with Erectile Aids
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Citation Excerpt :
In fact, McCarthy and McCarthy suggested that unrealistic expectations around sildenafil contribute to the development of nonsexual marriages.20 Research has shown that men who undergo PCa treatment frequently have overly optimistic expectations about sexual outcomes post-treatment and about the efficacy of EAs.21,22 Patients are rarely educated about what outcomes are reasonable to expect.
Prostate cancer (PCa) treatments commonly lead to erectile difficulties. While the mainstay treatment is erectile aids (EAs) to promote erectile recovery, some men never use these treatments and those whose do use EAs often abandon them in the long-term.
The goal of this study was to examine PCa patients’ experiences with EAs, to elucidate relationships between experiences with EAs on psychological and sexual well-being, and to explore benefits and drawbacks to EA use.
A self-report survey including validated questionnaires was administered to examine PCa patients’ use and perceptions of helpfulness of EAs, and to characterize associations between use, perceived helpfulness, and psychological and sexual well-being. The survey was followed by an open-ended prompt to explore participants’ experiences with EAs.
We surveyed 260 North American men, up to 25 years after receiving treatment for PCa. Three groups of patients were observed, including those who used EAs and perceived them to be helpful, those who used EAs and perceived them to be unhelpful, as well as a smaller group of patients who never used EAs.
Around 80% of the sample were using or had used EAs. Despite the high frequency of use, not all men found EAs helpful. Men who used EAs and found them unhelpful reported poorer psychological and sexual well-being compared to men who didn't use aids or who used EAs but found them helpful. Results indicated both benefits and drawbacks to the use of EAs. Benefits related largely to the efficacy of the aid in promoting erections. A wide range of drawbacks were also reported.
Given the negative sexual and psychological impacts associated with using EAs and finding them unhelpful, we suggest that researchers and health care providers should take care to proactively address potential challenges that are common with EA use, and also to consider the risks of failed attempts with EAs.
By using both scaled and open-ended questions, a more nuanced picture of the relative benefits and limitations of EA use within the PCa population is presented. As responses were not mandatory, a subset of participants provided comments about the use of EAs. Additionally, the sample was quite homogenous, with mostly white, American and well-educated participants, so it therefore lacks generalizability to other populations.
This paper illustrates several challenges to EA use, while providing insight into reasons for abandonment of use of EAs.
Walker LM, Sears CS, Santos-Iglesias P, et al. Hard Times: Prostate Cancer Patients’ Experiences with Erectile Aids. J Sex Med 2021;18:1775–1787.

View all citing articles on Scopus

¹: Martin G. Sanda’s MGS effort was funded in part by National Institutes of Health grant R01-CA95662.

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Adult urologyMeasuring patients’ expectations regarding health-related quality-of-life outcomes associated with prostate cancer surgery or radiotherapy

Abstract

Objectives

Methods

Results

Conclusions

Section snippets

Material and methods

Results

Comment

Conclusions

Acknowledgment

Urology

Urology

J Psychosom Res

J Urol

Quality of life in cancer patients—an hypothesis

J Med Ethics

Quality of life in cancer: definition, purpose, and method of measurement

Cancer Invest

The influence of personal expectations on cancer patients’ reports of health-related quality of life

Psychooncology

Adult urology
Measuring patients’ expectations regarding health-related quality-of-life outcomes associated with prostate cancer surgery or radiotherapy