The Lymphoedema Genitourinary Cancer Questionnaire in urology follow‐up clinics

Abstract

Is the Lymphoedema Genitourinary Cancer Questionnaire (LGUCQ) useful to men treated for genitourinary cancer through facilitating symptom disclosure? Lymphoedema can be debilitating and progressive and its association with bladder, prostate, testicular and penile cancer, either as a consequence of treatment or progressive disease is well recognized. However, lymphoedema is generally unrecognized during follow‐up. Research on genitourinary cancer‐related lymphoedema is sparse with a lack of reliable prevalence figures. A lack of empirical understanding of the experiences of these men led to the development of the LGUCQ, a simple two‐sided tool to facilitate self‐reporting of symptoms and difficulties associated with lymphoedema. Related pilot work suggests that written self‐report tools enable men to disclose more sensitive information than they would verbally. However, the LGUCQ had not been formally evaluated in an uro‐oncology department to identify the benefits from the perspective of the patients and health professionals. Thematic analysis of completed LGUCQs and interviews with patients and staff were performed. Emergent themes included the perceived barriers to symptom disclosure, the LGUCQ as facilitator and pragmatic addition, the support needs of patients and health professionals and refinements required for roll out. Issues limiting identification of lymphoedema within uro‐oncology services existed. Findings suggest the inclusion of the LGUCQ within uro‐oncology clinics could lead to earlier identification of lymphoedema. Patients could identify genital oedema problems with the LGUCQ increasing prompt and accurate disclosure and normalizing the experience.

What are the attitudes of health professionals regarding patient reported outcome measures (PROMs) in oncology practice? A mixed-method synthesis of the qualitative evidence

“…PROMs were also a means to structure consultations and interactions, and aided to prioritise issues of importance [10,29,37,40,42,43,50,57] (see also "Attitudes to the care experience"). Some studies [31,42,48,49] noted that HPs also saw PROMs as prompting patients to identify and prioritise issues from their own perspectives: "Actually, it [using the questionnaire] meant that we talked about issues which we wouldn't otherwise have touched upon because she hadn't thought of it, and I usually don't ask about it / … / it…”

“…Concerns Checklist "The aim of the study is to explore how specialist cancer nurses carry out first Items from PRO-CTCAE and PROMIS and authors own "Our primary objectives were the following: (1) solicit feedback from cancer clinicians and patients to develop a web- Sensitive issues A few studies (n = 6) reported that PROMs could "facilitate open dialogue and discussion of sensitive topics" [29] (p776), related to issues that could be potentially upsetting or distressing [33,40,43,48]. It was noted that this may vary by patient: "I do think it's an important issue for patients, but obviously for some people it's an embarrassing one to bring up … and it might be that you can't solve the problem … but for some patients it's a very simple 'how many platelets do I need to have sex?"…”

“…PROMs data. Some findings suggested that PROMs brought new information to the fore [33,35,41,46,48,49,55,57], while others believed this information was already collected through other means [10,26,32,42,51]. The perceived meaningfulness of PROMs data was linked to the relevance of the items collected to the disease and the needs at different points over the patient's journey [30, 37, 42-45, 52, 56, 57]; "patients' problems vary during treatment and follow-up" [58] (p694).…”

“…Informing practice There were mixed views about whether PROMs would inform the practice of HPs. Some studies (n = 9) reported that PROMs helped HPs to ensure comprehensive coverage of issues and helped to refine the focus and streamline consultations [29,41,42,48,49,51,53,54,58]. HPs saw the potential for this to influence positively decision-making [27,28,31,33,42,45,49,51,52,54].…”

“…Patient engagement PROMs are perceived as a means through which patients may more actively direct their own care [34,37,50]. HPs in some studies (n = 7) described the "empowering" facets of PROMs-supported engagement, noting it could promote the "voice" of patients in their care [29,34,37,45,48,50,56]. A few studies (n = 3) also noted the potential for PROMs to bring patients back into care when they had unresolved issues [10,53,54].…”