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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.

Background Little is known about the experience of health service access amongst people living with PD in Ireland. Methods Semi-structured telephone interviews were conducted from April 2020–January 2021. Purposive maximum variation sampling was employed, to ensure diversity. Recruitment was multipronged; through voluntary support groups, social media outlets, local newspaper, magazine and radio advertising, and posters in nursing homes and GP offices. Interviews ranged from 30–90 minutes and were audio-recorded. The data were managed using NVivo12. A thematic analysis was applied. Results Twenty-two participants were interviewed. Four themes were identified relating to service access: 1) ‘The Two Waitlists’; 2) ‘Geographic Factors’; 3) ‘The Private-Public Switch’; and 4) ‘Discriminatory Practices’. Regarding theme 1, the lengthy public waiting list was a deterrent, leading many to pay out-of-pocket to obtain their PD diagnosis privately. However, many cannot afford to pay out-of-pocket, creating a distinct inequity in terms of timely access for those with fewer resources. Additionally, post-diagnosis, the wait times between outpatient follow-up visits is significantly greater for public patients. The second theme refers to the distribution of PD services across the country; the concept of the ‘postcode lottery’ was recurring. Substantial variation in service provision is evident, with rural areas being particularly under-served. The ‘Private-Public Switch’ refers to a pattern of transfer from the private to the public system, post-diagnosis, to access to the range of HSCPs necessary for optimal PD management. Finally, ‘Discriminatory Practices’ refers to perceived discrimination by referring healthcare professionals, at two levels, on the basis of 1) age, and/or 2) perceived severity of disability. Such practices can affect timely access to diagnosis, and ongoing integrated PD management. Conclusion The two-tier health system structure, along with under-provision of integrated, outpatient PD services in certain areas, and biases/lack of knowledge amongst referring healthcare professionals, have contributed differentially to inequities in access for public and private PD patients across Ireland.

Introduction Despite the growing prevalence of Parkinson’s disease (PD), and the need to plan for future health service provision, very little is known in the Irish context about PD patients’ experiences of health service access and use. Method A cross-sectional survey design, with multiple formats, i.e. online, pen-and-paper, and telephone. Data were collected from May 2020–July 2021 using a multipronged recruitment strategy. It could be completed by a person with PD, or a support person on behalf of/with the person. Survey development was informed through literature review, and in consultation with the Parkinson’s Association of Ireland, and a patient advisory group (N = 10). Results A total of 1,504 individuals accessed the survey, with 1,402 meeting the eligibility criteria. Over half (53%) were male. Approx. 9% were diagnosed with young-onset PD. A minority (6%) reported attending only their GP to manage their PD, with the rest attending a specialist outpatient clinic. The mean distance travelled each-way to outpatient clinics was 45.6 km (SD = 49.4, min 1 km, max. 300kms). Most were diagnosed by Neurologists (84%), followed by GPs (8%), and Geriatricians (7%); 1% indicated ‘other’. Of those diagnosed by a Neurologist or Geriatrician, most were diagnosed privately (68%); though 37% of these patients subsequently switched to the public system for ongoing management. The majority (97%) reported currently taking PD medications, but just 52% believed these were working effectively. Just over one-fifth (22%) had access to a PD nurse specialist. Access to the range of other health and social care professionals is also reported, and is universally poor for this patient group. Conclusion A number of significant gaps in PD care have been identified, which require urgent attention. A reconfigured model of PD care is necessary to accommodate the growing need for specialist, integrated care at the population level.

Background Despite the growing prevalence of Parkinson’s disease (PD), and the need to plan for future health service provision, very little is known in the Irish context about PD patients’ experience of health services. Methods A cross-sectional survey design, with multiple formats, i.e. online, pen-and-paper, and telephone. Data were collected from May 2020–July 2021 using a multipronged recruitment strategy. It could be completed by a person with PD, or a support person on behalf of/with the person. Survey development was informed through literature review, and in consultation with the Parkinson’s Association of Ireland, and a patient advisory group (N = 10). Results A total of 1,504 individuals accessed the survey, with 1,402 meeting the eligibility criteria. Over half (53%) were male, and the distribution across Ireland’s provinces was: Leinster (46%); Munster (28%); Connaught (19%); and Ulster (7%). Approx. 5% were diagnosed with young-onset PD. A minority (6%) reported attending only their GP to manage their PD, with the rest attending a specialist outpatient clinic. The mean distance travelled each-way to outpatient clinics was 45.6 km (SD = 49.4, min 1 km, max. 300kms). Most were diagnosed by Neurologists (84%), followed by GPs (8%), and Geriatricians (7%); 1% indicated ‘other’. Of those diagnosed by a Neurologist or Geriatrician, most were diagnosed privately (68%); though 37% of these patients subsequently switched to the public system for ongoing management. The majority (97%) reported currently taking PD medications, but just 52% believed these were working effectively. Just over one-fifth (22%) had access to a PD nurse specialist. Access to the range of other health and social care professionals is also very poor for this patient group. Conclusion A number of significant gaps in PD care have been identified, which require urgent attention. A reconfigured model of PD care is necessary to accommodate the growing need for specialist, integrated care at the population level.