“Picture this”- Patients’ Drawings of Non-Muscle Invasive Bladder Cancer: A Novel Method to Help Understand How Patients Perceive Their Condition

Abstract

BACKGROUND: There is a paucity of data regarding patient experiences of living with non-muscle-invasive bladder cancer (NMIBC). OBJECTIVES: To investigate patients’ beliefs about NMIBC utilising both a well-established verbal/linguistic method, the Brief Illness Perception Questionnaire (B-IPQ) in addition to a novel visual/perceptual method, that is, asking patients to draw their bladder as it is now and as they perceive it will be in the future. METHODS: Cross-sectional study of patients with NMIBC. Patients completed: (i) the B-IPQ, and (ii) 2 drawings of their bladder: as they perceived it currently and as they perceived it would look in 5 years’ time. RESULTS: A total of 118 patients completed the B-IPQ, of which 96 produced 2 bladder drawings. Forty-seven per cent of patients depicted no change in their bladder across time, 35% depicted improvements, while 18% drew their NMIBC as deteriorating between the two time points. Patients who drew their NMIBC worsening over time reported significantly stronger beliefs in the severity of current consequences from their NMIBC (F2,94 = 9.07, p < 0.001, m = 5.68 95% CI 4.38–6.88) and greater current concerns about their NMIBC (F2,94 = 6.17, p < 0.01, m = 7.06, 95% CI 5.47–8.66). This was unrelated to cancer grade, cancer stage, treatment or demographic variables. CONCLUSION: This is the first study to explore beliefs about NMIBC in a sample of patients with NMIBC attending routine clinics using both a well-established and a novel method of assessing patients’ perceptions. Results highlight the usefulness of a simple non-verbal technique, in identifying patients’ concerns about the condition. Almost one fifth of patients with NMIBC may experience significant concerns about the worsening of their condition, which appear to be independent of demographic, histopathological, and treatment related variables. Further exploration of the psychological concerns of individuals with NMIBC is required in order to appropriately plan for needs led multidisciplinary approach in their care.

‘I Had It. I Don’t Think I Have It…But I Do Feel It Will Come Back Somewhere’: A Qualitative Investigation of the Experience of People With Non-Muscle Invasive Bladder Cancer

“…Many of those interviewed referred to the physical aspects associated with NMIBC and appraised themselves currently as ‘normal’ and ‘healthy’. This is commensurate with a previous study in NMIBC which found that patients tended to conceptualise their bladders in disease-focused ways, either with or without tumours (Richards et al, 2021).…”

“…Recent quantitative research studies have yielded findings which have demonstrated the burden on bladder cancer patients’ quality of life and psychological wellbeing at all stages of the illness (Brisbane et al, 2019; Jung et al, 2021; Jung et al, 2020; Nayak et al, 2021; Pham et al, 2019; Richards et al, 2021; Smith et al, 2018; Vartolomeia et al, 2018). One recent population-based study showed individuals with NMIBC to have self-reported elevated levels of post-traumatic stress disorder symptoms, and it is suggested that the ongoing deleterious experiences of invasive cystoscopy procedures and/or invasive treatments for NMIBC patients may be related to continuing psychological distress for this group (Jung et al, 2021).…”

The clinical effect of gratitude extension-construction theory nursing program on bladder cancer patients with fear of cancer recurrence

“…Richards H L et al. believed that FCR gradually decreased, which was consistent with the research findings ( 17 , 18 ). This may be when facing traumatic events, high-level cognition helps patients rebuild resources destroyed by the crisis.…”