Information needs in patients with bladder cancer undergoing radical cystectomy – A qualitative review with thematic synthesis

Ståhlgren, Malin; Forsell, Camilla; Drott, Jenny

doi:10.1016/j.ejon.2022.102231

Cited by 4 publications

(5 citation statements)

References 36 publications

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“…In particular, patients felt that there was insufficient discussion of all treatment options, recovery, potential sexual dysfunction, and urostomy bag challenges. These findings build upon those from a qualitative review of information needs in patients with bladder cancer undergoing radical cystectomy, which similarly highlight how patients felt that they did not receive enough information about side effects, recovery times, and post-operative care prior to treatment [28]. Though providing this information earlier may not change patient decisions, it may improve the patient experience and mitigate disparities in unexpected outcomes.…”

Section: Discussionmentioning

confidence: 58%

Factors Influencing Patient Decision-Making in the Treatment of Muscle-Invasive Bladder Cancer

Desai,

Bouknight,

Reed

et al. 2024

Bladder Cancer

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BACKGROUND: In 2023, an estimated 82,290 individuals were diagnosed with bladder cancer in the United States. For muscle-invasive bladder cancer (MIBC), the American Urological Association recommends offering radical cystectomy with cisplatin-based neoadjuvant chemotherapy. However, patients are increasingly requesting alternative treatments. OBJECTIVE: To describe factors influencing selection of radical cystectomy with cisplatin-based neoadjuvant chemotherapy (NAC + RC), radical cystectomy monotherapy (RC), or tri-modality therapy (TMT) among patients with MIBC. METHODS: Individual, semi-structured phone interviews were conducted with 18 adults who underwent MIBC treatment at the University of North Carolina, recruiting six patients each from three treatment groups: 1) NAC + RC, 2) RC, and 3) TMT. Interview transcriptions were qualitatively analyzed using QSR NVivo, with major themes and sub-themes extracted. Patients also completed the Shared Decision-Making Questionnaire (SDM-Q-9; range 0–100). RESULTS: Concern for survival and risks, quality of life, and varied patient preferences for involvement influenced the decision-making process. Concern surrounding sexual function, bladder preservation, and urostomy bags drove patients towards TMT. High levels of shared decision-making were observed overall, with a median SDM-Q-9 score of 95 (IQR 89–100). Patients undergoing TMT reported the highest median SDM-Q-9 score (97, IQR 94–100), while those receiving radical cystectomy alone had the lowest (66, IQR 37–96). CONCLUSIONS: Patients with MIBC described a multifaceted treatment decision-making process, highlighting key influences, concerns, and unmet needs. Understanding this process can help address misconceptions and align treatment choices with patient goals. Physicians can use these insights to engage in shared decision-making, ultimately improving patient experiences and outcomes.

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Section: Discussionmentioning

confidence: 58%

Factors Influencing Patient Decision-Making in the Treatment of Muscle-Invasive Bladder Cancer

Desai,

Bouknight,

Reed

et al. 2024

Bladder Cancer

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“…In both our study and previous research, establishing trust in the information provider, tailoring communication to meet each patient’s unique needs, and providing ample time for patients to absorb information were identified as important supporting factors [ 9 ]. Addressing the impact of treatment on sexuality deserves particular attention, as several studies have specifically reported it as an unmet informational need in bladder cancer patients, especially in female and older patients [ 9 ]. If confidence in the treatment or trust in the clinicians is lacking, it may result in a frustrating process of seeking second opinions until this need is met, as was similarly described in a previous study [ 10 ].…”

Section: Discussionmentioning

confidence: 73%

“…Throughout the counselling process, clinicians should be aware of the difficulties patients face in absorbing pre-treatment information. Contributing factors to this challenge include limited basic knowledge about bladder cancer and the emotional stress associated with receiving a bladder cancer diagnosis [ 9 ]. In both our study and previous research, establishing trust in the information provider, tailoring communication to meet each patient’s unique needs, and providing ample time for patients to absorb information were identified as important supporting factors [ 9 ].…”

Section: Discussionmentioning

confidence: 99%

“…Contributing factors to this challenge include limited basic knowledge about bladder cancer and the emotional stress associated with receiving a bladder cancer diagnosis [ 9 ]. In both our study and previous research, establishing trust in the information provider, tailoring communication to meet each patient’s unique needs, and providing ample time for patients to absorb information were identified as important supporting factors [ 9 ]. Addressing the impact of treatment on sexuality deserves particular attention, as several studies have specifically reported it as an unmet informational need in bladder cancer patients, especially in female and older patients [ 9 ].…”

Section: Discussionmentioning

confidence: 99%

“…In patients eligible for both treatments, the treatment decision should be made through shared decision-making [ 7 , 8 ]. However, informational support has been reported as an important unmet need in patients with bladder cancer [ 9 ]. Moreover, a recent qualitative study showed that uncertainties about treatment decisions could be limited if patients receive sufficient information about the different treatment options available [ 10 ].…”

Section: Introductionmentioning

confidence: 99%

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Radical cystectomy or trimodality therapy for muscle-invasive bladder cancer: a qualitative study exploring patient priorities and counselling needs when making a treatment choice

Verghote,

Van Praet,

Berquin

et al. 2024

BMC Cancer

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Background This study aims to explore the priorities and counselling needs of patients with muscle-invasive bladder cancer faced with a decision between radical cystectomy and trimodality therapy. Methods We performed a qualitative study according to the phenomenological approach. Sixteen muscle-invasive bladder cancer survivors who underwent radical cystectomy or trimodality therapy completed a semi-structured interview between May 2022 and February 2023. Patients were recruited via Ghent University Hospital and a patient organisation. Data were analysed with inductive thematic analysis by a multi-disciplinary team using an iterative approach and investigators’ triangulation. Results Four main priorities determining the treatment decision were identified. (1) curing the disease; (2) health-related quality of life (physical, mental and social); (3) confidence in the treatment, which was mainly based on trust in the clinician; and (4) personal attributes. Trust in the clinician can be achieved by fulfilling the patient’s information needs (accurate, complete, clear, impartial, personalised, realistic, and transparent information), ensuring accessibility of the clinician, and creating a clear and personalised treatment plan, involving patients to the extend they desire. Many patients considered a patient decision aid as a valuable asset in this process. Conclusion Priorities vary between patients with muscle-invasive bladder cancer. Identifying individual priorities and offering personalised information about them is crucial for ensuring trust in the clinician and confidence in the treatment. Use of a patient decision aid can be beneficial in this process.

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“…I Wish Someone Told Me About That…”: A Qualitative Assessment of the Educational Needs of Patients Undergoing Cystectomy

Zeng,

Saucke,

Pati

et al. 2024

Urology

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Information needs in patients with bladder cancer undergoing radical cystectomy – A qualitative review with thematic synthesis

Cited by 4 publications

References 36 publications

Factors Influencing Patient Decision-Making in the Treatment of Muscle-Invasive Bladder Cancer

Factors Influencing Patient Decision-Making in the Treatment of Muscle-Invasive Bladder Cancer

Radical cystectomy or trimodality therapy for muscle-invasive bladder cancer: a qualitative study exploring patient priorities and counselling needs when making a treatment choice

“…I Wish Someone Told Me About That…”: A Qualitative Assessment of the Educational Needs of Patients Undergoing Cystectomy

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