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Publication Detail
Exploring patients' experience and perception of being diagnosed with bladder cancer: A mixed methods approach
OBJECTIVE: To determine patient experience and perception following a diagnosis of non-muscle invasive bladder cancer (NMIBC). PATIENT AND METHODS: Patients were part of a prospective multi-centre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials.gov: NCT02781428). A mix methods approach comprising 1) the Brief Illness Perception Questionnaire (Brief IPQ) and 2) semi-structured interviews to explore patients' experience of experiencing haematuria, initial and subsequent experience with NMIBC diagnosis. Both assessments were completed at 6 months following NMIBC diagnosis. RESULTS: A total of 213 patients completed the Brief IPQ. Patients felt that they had minimal symptoms (median [IQR: 2 [0-5]) and were not particularly affected emotionally (3 [1-6]) with a minimal effect to their daily life (2 [0-5]). However, they remained concern about their cancer diagnosis (5 [3-8]) and felt that they had no personal control over the cancer (2 [2-5]) and believed that their illness would affect them for some time (6 [3-10]). A significant association with a lower personal control of the disease (p<0.05) and a poorer understanding of the management of NMIBC (p<0.05) was observed in patients >70 years of age. A high number of patients were uncertain about the cause of their bladder cancer diagnosis. Qualitative analysis found that at initial presentation of haematuria, most patients were not aware of the risk of bladder cancer. Patients were most anxious and psychologically affected between the interval of cystoscopy diagnosis and transurethral resection of bladder tumour (TURBT). Following TURBT, most patients were positive about their cancer prognosis. CONCLUSION: NMIBC patients have a poor perception of disease control and believe that their disease will continue over a prolonged period of time. This is particularly more pertinent in the elderly. Patients are most psychologically affected during the interval between cancer diagnosis following cystoscopy and tumour resection at TURBT. Further, health awareness about the causes of bladder cancer remained poor with a significant number of patients unaware of the cause of bladder cancer. Psychological support and prompt TURBT following bladder cancer diagnosis would help improve the mental health of patients with NMIBC.
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