Unmet informational and supportive care needs of patients following cystectomy for bladder cancer based on age, sex, and treatment choices

Mohamed, Nihal; Pisipati, Sailaja; Lee, Cheryl T.; Goltz, Heather Honoré; Latini, David; Gilbert, Francis; Wittmann, Daniela; Knauer, Cynthia; Mehrazin, Reza; Sfakianos, John P.; McWilliams, Glen; Quale, Diane Zipursky; Hall, Simon

doi:10.1016/j.urolonc.2016.06.010

Cited by 66 publications

(78 citation statements)

References 21 publications

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“…This left 18 publications reviewed in full, 10 articles were excluded (Bayar et al, 2008;Chawla and Arora, 2013;Cherrier et al, 2013;Karvinen et al, 2007;Lester, 2012;Månsson et al, 1998;Modh et al, 2014;Shih and Porter, 2011;Weinstein Dunn, 2015;Williams-Cox, 2004) with reasons because they did not meet the inclusion criteria, see Figure 1. This left 8 articles which fully met the inclusion criteria, of which two articles reported on the same study (Mohamed et al, 2014;Mohamed et al, 2016). In total, there were 6 exploratory qualitative studies (Ali and Khalil, 1989;Cerruto et al, 2014;Fitch et al, 2010;Månsson et al, 1991;Mohamed et al, 2014;Mohamed et al, 2016;Nordström et al, 1992;Perlis et al, 2014) and one feasibility RCT study (Ali and Khalil, 1989) see Table 3 for an overview of the studies included (Supplementary Table 5 contains full data extraction of primary studies).…”

Section: Search Resultsmentioning

confidence: 99%

“…This left 8 articles which fully met the inclusion criteria, of which two articles reported on the same study (Mohamed et al, 2014;Mohamed et al, 2016). In total, there were 6 exploratory qualitative studies (Ali and Khalil, 1989;Cerruto et al, 2014;Fitch et al, 2010;Månsson et al, 1991;Mohamed et al, 2014;Mohamed et al, 2016;Nordström et al, 1992;Perlis et al, 2014) and one feasibility RCT study (Ali and Khalil, 1989) see Table 3 for an overview of the studies included (Supplementary Table 5 contains full data extraction of primary studies). This is a relatively small number of publications and underscores the importance of taking stock of the evidence to understanding the supportive care needs of patients affected by bladder cancer.…”

Section: Search Resultsmentioning

confidence: 99%

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Unmet informational and supportive care needs of patients with muscle invasive bladder cancer: A systematic review of the evidence

Paterson

Jensen

et al. 2018

European Journal of Oncology Nursing

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This review contributes to a greater understanding of the unmet supportive care needs of patients affected by MIBC. Findings reflect a paucity of research, but existing studies indicated needs commonly related to intimacy, informational, physical and psychological needs. Despite the emerging evidence-base, the current within study limitations precludes our understanding about how the needs of patients evolve over time.

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Section: Search Resultsmentioning

confidence: 99%

Section: Search Resultsmentioning

confidence: 99%

Unmet informational and supportive care needs of patients with muscle invasive bladder cancer: A systematic review of the evidence

Paterson

Jensen

et al. 2018

European Journal of Oncology Nursing

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“…Over the past 5 years, there have been a handful of studies that have attempted to describe or map the information and supportive care needs of those diagnosed with bladder cancer from the perspective of the individual (3)(4)(5)(6)(7)(8). There are few studies which have looked at the understanding of these needs from the other main stakeholder groups (health care professionals (e.g., urologists, oncologists, cancer nurse specialists), researchers and non-profit organizations) in the design and delivery of care.…”

Section: Introductionmentioning

confidence: 99%

“…They found that individuals reported unmet needs across five key domains-(1) health system and information needs, (2) patient care and support, (3) physical/daily living, (4) psychological well-being, and (5) sexuality. Mohamed et al (5) then conducted a further investigation of this data and found that the unmet needs of those living with MIBC vary by age, sex, and treatment choice. They make the argument that assessment and intervention needs to be tailored to these specific needs.…”

Section: Introductionmentioning

confidence: 99%

“…Paterson et al (5) systematically reviewed and summarized the literature on supportive care needs of those with MIBC. Their paper characterizes supportive care needs in nine domains: (1) patient-clinician communication, (2) daily living needs, (3) health system/information needs, (4) practical needs, (5) family-related needs, (6) social needs, (7) psychological needs, (8) physical needs, and (9) intimacy needs.…”

Section: Introductionmentioning

confidence: 99%

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How Do We Meet the Supportive Care and Information Needs of Those Living With and Beyond Bladder Cancer?

MacLennan

2020

Front. Oncol.

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This perspective paper presents the case for adopting a new approach to the design and delivery of supportive care for those with bladder cancer. It is our assertion that the design and delivery of supportive care for those diagnosed with bladder cancer needs to (1) build on existing research and available tools and (2) address current limitations due to lack of use of said tools, lack of understanding of research and needs, lack of a shared language, and method of assessment and evaluation. This, we argue, can be achieved through a network-based approach (1) focussed on the structure, process, and outcome of supportive care.

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Female sexual function in bladder cancer: A review of the evidence

et al. 2022

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Background Bladder cancer (BC) treatments are known to be invasive; nevertheless, research into the long‐term effects is limited and in the context of sexual function often male focussed. Female sexual dysfunction (FSD) has been reported in up to 75% of female patients. This systematic scoping review examines the literature on sexual consequences of BC in female patients. Objective This study aimed to systematically evaluate the evidence on female sexual function in BC to identify areas of unmet need and research priorities. Evidence Acquisition We performed a critical review of PubMed, PsychMed, CINAHL, MEDLINE and the Cochrane Library in March 2020 according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis (PRISMA) extension for Scoping Reviews statement following Levac et al. methodology. Identified reports were reviewed according to the Critical Appraisal Skills Programme (CASP) criteria. 45 publications were included. Evidence Synthesis There was an inconsistent use of patient‐reported outcome measures (PROMs), with commonly used PROMs having a narrow symptom focus. However, common symptoms emerged: loss of desire, orgasmic disorders, vaginal dryness, dyspareunia, difficult intromission, reduced clitoral sensation, psychological concerns related to diagnosis, fear of contamination and body image. Sexual activity was reduced in most groups, despite women expressing a motivation to retain sexual function. The degree of symptom distress associated with FSD is underreported. Evidence emerged regarding a gap for women in clinician counselling and follow‐up. Conclusions The patient's perspective of FSD in BC patients is poorly understood and under‐addressed in clinical practice. There have been very few qualitative studies of FSD in BC. Any intervention designed to address the problem must start with greater understanding of both the patients' and clinicians' perspective. Lay Summary We examined the evidence on sexual consequences of BC in women. It is apparent that despite common themes of sexual dysfunction emerging, the problem is poorly understood and addressed in clinical practice.

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Unmet informational and supportive care needs of patients following cystectomy for bladder cancer based on age, sex, and treatment choices

Cited by 66 publications

References 21 publications

Unmet informational and supportive care needs of patients with muscle invasive bladder cancer: A systematic review of the evidence

Unmet informational and supportive care needs of patients with muscle invasive bladder cancer: A systematic review of the evidence

How Do We Meet the Supportive Care and Information Needs of Those Living With and Beyond Bladder Cancer?

Female sexual function in bladder cancer: A review of the evidence

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